Projecting a Critique of Stigma Associated With Dementia on Screen: The Impact of a Canadian Film on the Importance of Relational Caring in the Community.

BACKGROUND AND OBJECTIVES: Relational caring has the capacity to reduce stigma associated with dementia by shifting the focus from dysfunction and behavior management, to attending to the interdependencies and reciprocities that underpin caring relationships, and making explicit the centrality of relationships to quality care, growth, and quality of life. Education, particularly arts-based approaches, has been identified as a key strategy to decrease stigma. Yet rarely are the arts utilized in educational initiatives, and particularly so in community care settings. With an interest in redressing this, our team evaluated the impact of a Canadian filmed research-based drama-Cracked: new light on dementia-about stigma associated with people living with dementia and their families. RESEARCH DESIGN AND METHODS: We conducted interviews with family carers of people living with dementia and formal care providers affiliated with community-based dementia care, and also the general public at 3 and 8 months postscreening. RESULTS: Our analysis of participants' perceptions/experiences illustrates the effectiveness of Cracked in reducing stigma by demonstrating changes in the understanding of dementia and changes in practice. Our analysis also includes attention to how the film, as a form of cultural production, deepened engagement and facilitated transformation. DISCUSSION AND IMPLICATIONS: Our evaluation of Cracked demonstrates that it is an effective strategy for decreasing the stigma associated with dementia by promoting relational caring. It also importantly contributes to the theoretical literature that supports film-based approaches to stigma reduction.

Free to be: Experiences of arts-based relational caring in a community living and thriving with dementia.

AIM: To present findings about experiences of relational caring at an arts-based academy for persons living with dementia. BACKGROUND: There is a compelling call and need for connection and relationships in communities living with dementia. This study shares what is possible when a creative arts-based academy for persons living with dementia grounded in relational inquiry and caring focuses on relationships through the medium of the arts. DESIGN: A qualitative phenomenological methodology (informed by van Manen) was used to answer the research question, "What is it like to experience relational caring at an arts-based academy for persons living with dementia?" We address two research objectives: (1) to explore how relationships are experienced when a relational caring philosophy underpins practice, including arts-based engagements; and (2) to understand the meaning of relationships that bring quality to day-to-day living. METHODS: Twenty-five participants were recruited from the Academy and interviewed in one-to-one in-depth interviews or small groups. Participants included five persons living with dementia, eight family members, four staff, five artists, one personal support worker, and two volunteers. Participants were asked to describe their experiences of relational caring or relationships in the Academy space. FINDINGS: Three thematic patterns emerged, which address the research objectives.Relational caring is experienced when:freedom and fluid engagement inspire a connected spontaneous liveliness;embracing difference invites discovery and generous inclusivity; andmutual affection brings forth trust and genuine expression. CONCLUSIONS: Findings contribute to the growing body of knowledge about both relational caring and arts-based practices that call forth a different ethic of care-one that is relational, inclusive, and intentional. Findings also shed light on what is possible when a relational caring philosophy underpins arts-based practices-everyone thrives.

Creating a relational arts-based academy for persons living with dementia.

A hospital-university collaboration has created an innovative learning Academy for persons living with dementia. Authors propose essential foundations for creating a different culture of dementia care: a home-like, judgement free place; a relational space focused on artistic expression and discovery; and, the marriage of learning with a deep respect for difference and growth. An array of challenges and insights highlight the commitments required to create and sustain real change. Partnerships with community organizations and schools merged relational philosophy-based research, teaching-learning, and art to generate new patterns of innovative practices. The commitment of the Academy is to relational arts-based inquiry focused on relationships, life enrichment, and engagement in a space where everyone thrives.

What bereaved parents want health care providers to know when their babies are stillborn: a community-based participatory study.

BACKGROUND: Bereaved parents experience higher rates of depressive and post-traumatic stress symptoms after the stillbirth of a baby than after live-birth. Yet, these effects remain underreported in the literature and, consequently, insufficiently addressed in health provider education and practice. We conducted a participatory based study to explore the experiences of grieving parents during their interaction with health care providers during and after the stillbirth of a baby. METHODS: This community-based participatory study utilized four focus groups comprised of twenty-seven bereaved parents (44% fathers). Bereaved parents conceptualized the study, participating at all stages of research, analyses, and drafting. Data were reduced into a main theme and subthemes, then broad-based member checked to ensure fidelity and nuances within themes. RESULTS: The major theme that emerged centered on provider acknowledgement of the baby as an irreplaceable individual. Subthemes reflected 1) acknowledgement of parenthood and grief, 2) recognition of the traumatic nature of stillbirth, and 3) acknowledgement of enduring grief coupled with access to support. It was important that providers realized how grief was experienced within health care and social support systems, concretized by their desire for long-term, specialized support. CONCLUSIONS: Both mothers and fathers feel that acknowledgement of their baby as an individual, their parenthood, and their enduring traumatic grief by healthcare providers are key elements required in the process of initiating immediate and ongoing care after the stillbirth of a baby.

Re-claiming citizenship through the arts.

Healthcare literature, public discourse, and policy documents continue to represent persons with dementia as "doomed" and "socially dead." This tragedy meta-narrative produces and reproduces misunderstandings about dementia and causes stigma, oppression, and discrimination for persons living with dementia. With few opportunities to challenge the dominant discourse, persons with dementia continue to be denied their citizenship rights. Drawing on the concept of narrative citizenship, we describe a community-based, critical arts-based project where persons with dementia, family members, visual and performance artists, and researchers came together to interrogate the tragedy discourse and construct an alternative narrative of dementia using the arts. Our research demonstrates the power of the arts to create transformative spaces in which to challenge dominant assumptions, foster critical reflection, and envision new possibilities for mutual support, caring, and relating. This alternative narrative supports the reclamation of citizenship for persons living with dementia and fosters the relational citizenship of all.

Igniting Transformative Change in Dementia Care Through Research-based Drama.

PURPOSE OF THE STUDY: Little research has examined the lasting impact of the arts. As part of a longitudinal research project, we set out to examine how personal images, understandings, and actions of family members (FMs) of persons with dementia and health care professionals (HCPs) change after the introduction of a research-based drama about the experiences of living with dementia called I'm Still Here. This article focuses on the shorter- (6 weeks) and longer-term (12 months) experiences of engaging with I'm Still Here and how those experiences triggered personal transformation. DESIGN AND METHODS: Informed by phenomenology, this article presents findings from follow-up telephone interviews conducted 6 weeks and 12 months after FMs of persons with dementia and HCPs attended a live performance of I'm Still Here. RESULTS: The phenomenological shifts reflected in the longitudinal data suggest a process of engagement with research-based drama that involves four themes: bearing witness to suffering evokes compassion; expanding with new awareness and understanding; finding comfort, confidence, and courage to change; and envisioning and enacting new possibilities. IMPLICATIONS: Findings demonstrate the possibilities of the arts for knowledge mobilization in changing the culture of dementia care through a process of illuminating new and enduring realizations and transforming actions and practices.

Emergence: complexity pedagogy in action.

Many educators are looking for new ways to engage students and each other in order to enrich curriculum and the teaching-learning process. We describe an example of how we enacted teaching-learning approaches through the insights of complexity thinking, an approach that supports the emergence of new possibilities for teaching-learning in the classroom and online. Our story begins with an occasion to meet with 10 nursing colleagues in a three-hour workshop using four activities that engaged learning about complexity thinking and pedagogy. Guiding concepts for the collaborative workshop were nonlinearity, distributed decision-making, divergent thinking, self-organization, emergence, and creative exploration. The workshop approach considered critical questions to spark our collective inquiry. We asked, "What is emergent learning?" and "How do we, as educators and learners, engage a community so that new learning surfaces?" We integrated the arts, creative play, and perturbations within a complexity approach.

Always with me: understanding experiences of bereaved children whose baby sibling died.

An arts-based qualitative method was used to explore the experiences of children's bereavement after a baby sibling's death, in the context of their family and school life. Data were collected during in-depth interviews with 9 bereaved children and 5 parents from 4 Canadian families and analyzed. A central process, evolving sibling relationship over the years, and a pattern of vulnerability/resilience, ran through all four themes, which reflected ideas of connection, impact of parental grief, disenfranchisement and growth. Findings indicated that home and school are critical to children in creating safe spaces for expressing the evolving nature of infant sibling bereavement.

Phenomenological shifts for healthcare professionals after experiencing a research-based drama on living with dementia.

AIM: The aim of this article is to report research findings describing phenomenological shifts, that is, changes in patterns of lived experience, for healthcare professionals who attended a performance of a research-based drama, called I'm Still Here. BACKGROUND: The research drama, based on six studies, was created to help change the ways persons understand, think about and relate with persons living with dementia. METHODS: In 2006-2007, 50 healthcare professionals from various disciplines and eight nursing students participated in this study. Participants were recruited from four Canadian cities in the province of Ontario where focus groups were held before and after engaging in a live performance of I'm Still Here. FINDINGS: Analysis of focus group transcripts showed shifts in patterns of lived experience for the healthcare professional participants as evident in the participants' descriptions. The phenomenological shifts reflected a move from descriptions of 'diminishing humanness to discerning humanness', from 'disengaged care/mundane relating to reflexive relating in the now', and 'terrifying portrayals of loss to awakening to hopeful possibility'. The shifts described herein are supported with examples from the focus group transcripts. CONCLUSIONS: Findings reveal the power of drama as a vibrant and meaningful means of shifting understandings, images and intended actions of healthcare professions which have the potential to affect the lived experiences, relationships and quality of life of persons with dementia.

Awakening to space consciousness and timeless transcendent presence.

Space consciousness is emerging as significant and necessary for the evolution of humanity according to spiritual teacher, Eckhart Tolle. Through space consciousness people become aware that we are timeless transcendent presence. This awareness is pronounced when with those who are living dying and their close others who are deeply grieving. Space consciousness and transcendent timeless presence in the context of living dying and deeply grieving are explored using nurse theorists' works in dialogue with Tolle's teachings.

Living with changing expectations for women with high-risk pregnancies: a Parse method study.

The purpose of this research was to uncover the structure of the lived experience of living with changing expectations from the perspectives of women with high-risk pregnancies. The researchers' nursing theoretical perspective is the humanbecoming theory and the Parse research method was used. For the participants, living with changing expectations is foreboding disquietude arising with arduous restrictions, while envisioning the yearned-for with mitigating nurturing engagements. Findings enhance the theory of humanbecoming as well as enhance understanding of the experience of living with changing expectations. Recommendations for future research and practice are discussed.

Research-based theatre: The making of I'm Still Here!

This column describes the process undertaken by a team of researchers, artists, and actors to create a research-based drama about living with dementia. Researchers had several studies, guided by the human becoming theory, about what life was like when living with dementia, and an additional study in progress about the lived experience of loss for daughters whose mothers were diagnosed with Alzheimer's disease. Researchers partnered with an experienced artistic director and playwright in order to craft a script and performance that could help others understand and see life with dementia in a new light. The crafting of the script was also informed by the experiences and insights of actors, healthcare professionals, and persons living with dementia. The play premiered before a group of 100 persons and families living with dementia and has since been performed approximately 40 times to hundreds of professionals and families. The evaluation of the play, at six of the performances, is presented in this column.

The possibility of changing meaning in light of space and place.

The author considers the possibility of changing meaning in light of space and place. Many questions are raised, including a fundamental question: If we simply choose the meaning of space and place based on personal knowing, regardless of the space and place we are in, does space and place really matter with regard to the possibility of changing meaning? Many possibilities of changing meaning in light of space and place are explored, including the influence of personal knowing, new life experiences and understandings, changes to space and place, unique languaging in space and place, imaging space and place, and engaging in the wonder and mystery of space and place beyond this realm. The possibility of changing meaning is significant in that new meanings open doors to different choices-and living choices is living health.

The experience of being listened to: a qualitative study of older adults in long-term care settings.

The experience of being listened to for older adults living in long-term care facilities was explored using a qualitative descriptive method outlined in Parse (2001), with the human becoming theory as the theoretical framework. The themes that emerged from this study--Nurturing Contentment, Vital Genuine Connections, and Deference Triumphs Mediocrity--affirmed the experience of being listened to as fundamental to the participants' quality of life. The findings expand nursing theory, provide enhanced understanding of the experience of being listened to, and offer ideas for future research. Through the voices of older adults participating in this study, the authors learn how critical listening is to quality care, and thus to excellence in nursing practice.

The language of loss when a baby dies prior to birth: cocreating human experience.

When a baby dies prior to birth, a woman and her family begin a life long journey of living and transforming with loss. The language used with families during times of devastating loss is important to reflect upon since, language has the potential to either intensify suffering or enhance the family's experience of grieving. Words that affirm the meaning the baby holds for the family can provide comfort as families engage with the reality of lost hopes and dreams. Recognizing that healthcare professionals do not intend to harm families whose babies die prior to birth, the current authors offer this column as a vehicle for reflecting on the meanings of words used during this particular time of loss and grief. The authors further explore the role that the arts have to play in expressing loss and in helping others to understand.

Exploring the lived experience of waiting for persons in long-term care.

The purpose of this study was to describe the meaning of waiting for persons who reside in long-term care settings. Parse's theory of human becoming provided the nursing perspective and a qualitative descriptive-exploratory design was used. The 45 participants were residents in three different long-term care facilities affiliated with a university. Data were gathered through interviews. Three emergent themes formed the following unified description: The experience of waiting is intensifying ire while diversionary immersions reprieve amid unfolding becalming endurance. The themes are discussed in relation to participants' descriptions, the human becoming theory, and related literature. Recommendations for practice and further research are presented.

Musical expressions of life: a look at the 18th and 19th century from a human becoming perspective.

What follows is an exploration of 18th and 19th century music of the Western world through a nursing science lens, specifically that of the human becoming theory. This article was written while I was enrolled in a music history course, which afforded me the opportunity to explore music as musical expressions of life. Rooted in the human becoming philosophical perspective, which focuses on unitary human experience and the quality of human life, I discuss musical expressions of life with examples from various composers throughout the 18th and 19th century. This article concludes with a reflection on musical expressions and their contribution to the enhancement of the quality of human life, a focus of nursing from a human becoming perspective.