Christine Jonas-Simpson

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.

Feeling Understood: A Melody of Human Becoming:

This phenomenological-hermeneutic study centered on the phenomenon of feeling understood, which was conceptualized by the researcher as a melody of human becoming significant to quality of life. For the first time the Parse research method was used with music as part of the dialogical engagement. The study was conducted with 10 women living with an enduring health situation who volunteered to be in tape-recorded dialogue with the researcher to discuss feeling understood and to create a musical expression of this phenomenon. The finding of this study, which is the structure of the lived experience of feeling understood, surfaced from the dialogues and musical expressions: Feeling understood is an unburdening quietude with triumphant bliss arising with the attentive reverence of nurturing engagements, while fortifying integrity emerges amid potential disregard.

The Experience of Engaging With Research-Based Drama: Evaluation and Explication of Synergy and Transformation:

Researchers describe how audiences experienced a research-based drama called I’m Still Here ; a production about persons and families living with dementia. The research drama was created to help diminish the unnecessary suffering that accompanies the misunderstanding and judgment of persons living with dementia. This article describes the immediate experience of seeing, hearing, and feeling research findings that have been transformed through drama. We explored how participants described the experience of engaging with the drama—what words they used, what was felt, and what lingered after the performance was over. Seven patterns or processes, called patterns of synergy are described: seeing anew; connecting with reverberating truths; placing and relating self; sensing embodied impact, discerning meaningful learning; expanding understanding of perspective; and affirming personal knowing. Each pattern of synergy is considered in light of participant quotes and extant literature. Findings support the promise of the arts in health-related research and education.

The Experience of Being Listened to: A Human Becoming Study with Music:

The purpose of this research was to discover the structure of the lived experience of being listened to from the perspective of 10 older women receiving in-patient rehabilitation. The Parse research method was used to guide this study where music was used in the dialogical engagement process. The women told their stories and created melodies of being listened to with the researcher using her flute. The findings include three core concepts—an acknowledging engagement, gratifying contentment, and an unburdening respite. Findings extend the theory of human becoming, enhance understanding of the experience of being listened to, and affirm its value.

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.

Nurses' Experiences of Grieving When There Is a Perinatal Death

Many nurses grieve when patients die; however, nurses’ grief is not often acknowledged or discussed. Also, little attention is given to preparing nurses for this experience in schools of nursing and in orientations to health care organizations. The purpose of this research was to explore obstetrical and neonatal nurses’ experiences of grieving when caring for families who experience loss after perinatal death. A visual arts-informed research method through the medium of digital video was used, informed by human science nursing, grief concepts, and interpretive phenomenology. Five obstetrical nurses and one neonatal intensive care nurse who cared for bereaved families voluntarily participated in this study. Nurses shared their experiences of grieving during in-depth interviews that were professionally audio- and videotaped. Data were analyzed using an iterative process of analysis-synthesis to identify themes and patterns that were then used to guide the editing of the documentary. Thematic patterns identified throughout the data were growth and transformation amid the anguish of grief, professional and personal impact, and giving–receiving meaningful help. The thematic pattern of giving–receiving meaningful help was made up of three thematic threads: support from colleagues; providing authentic, compassionate, quality care; and education and mentorship. Nurses’ grief is significant. Nurses who grieve require acknowledgment, support, and education. Supporting staff through their grief may ultimately have a positive impact on quality of work life and home life for nurses and quality of care for bereaved families.

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.

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.

Living the Art of the Human Becoming Theory

The author shows through examples how quality of life is enhanced when the nurse lives the art of the human becoming theory through composing and playing music with persons and families. Also demonstrated is Parses practice methodology as lived through music.

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.