The International Journal of Whole Person Care
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Doing 'Technological' Time in a Pediatric Hemodialysis Unit
No full textStudy objectives: For Canadian children living with end-stage renal disease, hemodialysis is a common intervention and usually received in a specialized ambulatory hospital-based unit. Although children spend up to 12 hours a week receiving hemodialysis, little is known about how they perceive and respond to hospital-based hemodialysis. The study’s purpose is to describe and interpret the children’s embodied situatedness in the temporal, spatial and technological regimes and relations of a pediatric hospital-based hemodialysis unit.Methods: An ethnography was undertaken at a Canadian urban pediatric hospital. Time, space, and technology are viewed as significant interrelated aspects of the hemodialysis unit and the unit is conceived as nested in the broader contexts of the children’s everyday lives. The theoretical framework merges concepts of human embodiment and contemporary human geographical perspectives and philosophy of technology.Results: The dominant theme emerging from the study findings is the notion of the children doing ‘technological’ time. The pervasiveness and reach of hemodialysis technologies upon the children profoundly textures their situations, shapes their perspectives, evaluations and expectations and impacts how they are seen by caregivers in the unit.Conclusions: Crucial changes in practices are essential to envision ways to create with children an overall positive place that merges and balances technological care with child focused care. The inclusion of children’s views is critical because many settings typically occupied by children have been designed and designated by authoritative or professional adults as “places for children” (Rasmussen, 2004, p. 155) without children being involved. Exploration of the findings may contribute to the ways that healthcare providers, funders, administrators and policy-makers can facilitate the inclusion of children in the design and care provision of hemodialysis units as well as other high-tech hospital-based units.ReferencesRasmussen, K. (2004). Places for children – children’s places. Childhood, 11(2), 155-173
Healing at the End of Life: The Voice of the Patient
No full textIn palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end
Caring for the Lived Experience: An Exercise in Teaching Whole Person Care
No full textCommon medical professions’ education for whole person care of seriously ill people and their family is often lacking. The balance of educational attention to the biology of disease often far outweighs similar attention to the lived experience of the illness and personal caring. In an attempt to test and teach the lived experience a written essay survey instrument has been created and administered to new palliative care staff and family medicine residents.A summary of the participant’s responses to questions concerning ethical principles, dignity, health care desires, compassion, existential suffering, hope, grief, mindfulness, attunement, and end of life care will be shared in narrative fashion accompanied with teaching points used with participants. Third year family medicine residents’ reflections will be shared to reflect the impact of the teaching of whole person care
Exploring the Relational Aspects of Patient and Doctor Communication
No full textThe alliance concept is an essential component of therapeutic relationships. Contrary to empirical evidence, its relevance is often not acknowledged in medical encounters. This circumstance invites the question, ‘‘How can the doctor and patient connect relationally with each other to improve the communication process and promote healing?’’ We propose that healing can be accomplished through dialog that emphasizes the collaborative nature of the partnership between the doctor and patient. The typical conversation in a medical encounter may be reduced to an information exchange and a medium for prescribing directives. This being-with approach can override patients’ involvement in the process. A positive doctor–patient relationship may be one of the most important, and most frequently overlooked, factors for predicting patient response to negative medical information. Receiving such news is potentially upsetting for the patient and may require the doctor to let go of the conversational medical agenda and adopt a being-for mode of relationship. We propose that this approach invites the doctor and patient to work together and negotiate how to manage the chronic illness eliciting patient-preferred treatment options. The authors propose the adoption of the being-for relationship as a way of enhancing the therapeutic potential of the doctor–patient relationship
Transforming the Intensive Care Culture Using the Palliative Approach
No full textIntroduction: Although the ultimate goal of the intensive care unit (ICU) is to save and prolong human life, the integration of palliative care approach in this fast-paced highly technologic environment is increasingly recognized as a means of restoring the global nature of care and enhances the integrity of the person. In this perspective, a recent study showed that three conditions promote the integration of palliative care in the ICU: sharing a common vision, a collaborative decision-making process and a proper environment.Objective: In light of these findings, this study proposes to develop, implement and evaluate an intervention to integrate these previously identified conditions. The purpose of this communication is to present our approach and its main results.Method: Based on the premise that research and action can coexist to improve practice, a qualitative inquiry of action research was chosen for this study. Valuing the consensual decision-making process, this research method provides an organizational structure allowing success and sustainability of this intervention.Results: The intervention aims to improve the quality of interdisciplinary communication and consisted of two main components. The first propose to enhance the skills and leadership of nurses through interactive training and the second focused on the improvement of intra and inter disciplinary intervention plan.Conclusions: The integration of the palliative care approach in the ICU is definitely an innovative strategy to transform the mission of the ICU caregivers and improve the care of the whole person
Whole Person Care at the Ottawa Integrative Cancer Centre
No full textObjectives: An interprofessional team of healthcare practitioners at the Ottawa Integrative Cancer Centre (OICC) provides individualized and whole person care in an effort to bridge the gap between conventional and complementary cancer care. The objective of this presentation is to describe the population receiving care at the OICC in terms of demographic and disease-related characteristics, in addition to their experience receiving care in terms of therapies received and preliminary outcomes.Methods: All people receiving care at the OICC are invited to complete a registration package that documents demographic and disease-related characteristics in addition to baseline quality of life (EORTC-QLQ C30), cancer-related symptom (ESAS) and patient-identified concerns or problems (MYCaW). Every 3 months, a follow up assessment is completed for continuing patients.Results: In the 18 months since opening, more than 600 unique people have received care at the OICC. Most commonly people consult a naturopathic doctor, often in combination with a general practitioner, nutritionist, acupuncturist, physiotherapist, or counselor. The majority of people seek care to manage cancer and treatment-related side effects, including pain, neuropathy, energy, and digestive concerns. Other people are seeking supportive interventions to their prescribed standard care, to control or cure their cancer, or to prevent a recurrence. Approximately one half of people self-identify as under distress for at least one common cancer-related symptom. Preliminary results will be presented regarding quality of life, cancer related symptoms and patient-identified concerns, stratified as possible by age, sex, cancer type, stage and types of treatment received.Conclusions: The results presented here contribute to an understanding of who seeks integrative and whole person care as well as the growing body of literature regarding potential benefits. Results will be used to guide development of a clinical trial designed to assess the feasibility, safety, effectiveness, and cost-effectiveness of integrative, whole person cancer care
Who Am I? Exploring Our Professional Identities: A Workshop for Health Care Professionals
No full textObjectives:1. Explore the history and meaning of each participant’s own professional identity2. Reflect on how professional identity affects the ability to be present with the patient3. Create a space to playfully explore benefits and burdens of the professional persona for caregivers and patients4. Consider possible new ways of being present as professional caregivers which may be safe, authentic, and often joyful.Background: Health care is highly professionalised. Health professionals are perceived as powerful and prestigious, with great responsibility for patients’ well-being. Social expectations of health professionals are extremely pervasive. Professionalisation involves learning and negotiating one’s role, and becoming comfortable in the professional persona. To offer whole person care requires the professional caregiver to be simply and authentically present with the patient. Yet the professional persona can be a barrier to presence, often using behaviours that are distancing, disease-focused, and impersonal. Over time, working as a professional can deeply affect our experience of ourselves.Workshop process: This workshop offers an opportunity to explore the effects of professional identities on us as caregivers and as persons.Some topics that will be considered: How do we experience our professional identities? Benefits and burdens of the roles we have adopted? Do they sustain us or not? How do they help, and hinder, our ability to be present for patients? How do we want to proceed in future? Through interactive, creative exercises in a supportive environment, participants will investigate the professional identities they have crafted over time. Using meditation and writing exercises, participants will reflect on the self that offers whole person care to patients, and what is needed for this self to flourish. Participants will share insights and challenges to being present, as a professional, with patients
The Information Senses of Whole Person Care: A PatientsLikeMe.com Case Study
No full textObjectives: Whole Person Care (WPC) situates the act of curing within a larger framework of healing, in which meeting psychological and social needs of patients during times of illness are also considered integral to patient outcomes and wellbeing. That is, WPC entails greater attention to how information behaviors can balance competing biological, psychological, and social dimensions of patient care within the therapeutic relationship (Hutchinson, 2011; Kaslow et al., 2007; Donadio, 2005, Mount, 2003). But what role does documentation play in patient-provider communication and meeting the biopsychosocial needs of patients via WPC? This poster visually represents a content analysis of data collected from PatientsLikeMe.com using Marchionini’s (2010) Information Sense Framework to reflect upon the role of personal health information management in WPC.Methods: Over an 8-month period starting in September 2010, the researcher engaged in participant-observation within PLM’s Mood Disorder Community, a social networking site and research platform for patients. Grounded Theory (Charmez, 2006; Strauss and Corbin, 1987) was used to analyze site members’ virtual interactions and evaluate the subjective impact of maintaining and sharing a public personal health record (PHR) with off-website care providers.Results: Observations confirm Information Senses is viable for interpreting the WPC functions of PHR. Site members described online PHR as effective self-management tools, by helping patients visualize, track, and understand changes in their health between visits; and enhancing the subjective quality of provider-patient relationships and communication during visits.Conclusions: Maximizing potential benefits entails reconceptualization of medical documentation beyond diagnostic, care-coordination, and audit functions for care providers exclusively. PHR also serve communicative and reminding functions that are underexploited. Leveraging documentation to enhance the quality of communication and trust between patients and care providers, through patient-accessibility health records for example, offers a viable route towards the realization of WPC and meeting biopsychosocial needs efficiently
Using Popular Nursing Literature Critique to Help Nursing Students Explore Their Perceptions of Disability
No full textObjectives: Disabled people have a history of disadvantage, discrimination, and disempowerment that continues to present day. Despite strong critique and activism by disabled people, popular understandings of disability as necessarily tragic, medically based, and individualistic requiring ‘fixing’ persist among health professionals. Recent research demonstrates that health professional students often harbour negative attitudes that may directly affect their relationships with and care provided to disabled clients (Sabin & Akyol, 2010; Scullion, 1999). Further, personal accounts and research evidence suggests that the relationship between healthcare providers and disabled people is often unsatisfactory (Sabin & Akyol, 2010; Seccombe, 2007; Scullion, 1999).Methods: Nursing education has a responsibility to ensure that nursing practice with disabled people is enabling rather than disabling (Scullion, 1999a, 1999b, 2000; Sabin & Akyol, 2010). A key strategy is to imbed within curricula opportunities for students to engage in the processes of critical thinking towards and analysis of disability and the experiences of disabled people. This poster describes an approach to teaching-learning in which critique of ‘popular culture’ nursing literature is used to support student exploration of messaging about disability.Results and Conclusions: The purpose and description of the assignment, authors’ experiences, and outcomes for both teachers and learners will be presented. Application beyond nursing to other health professions will be described.ReferencesSabin, H. & Akyol, A. D. (2010). Evaluation of nursing and medical students' attitudes towards people with disabilities. Journal of Clinical Nursing, 19, 22712279.Scullion, P. A. (1999). Conceptualizing disability in nursing: Some evidence from students and their teachers. Journal of Advanced Nursing, 29, 648657.Scullion, P. A. (2000). Enabling disabled people: Responsibilities of nursing education. British Journal of Nursing, 9(15), 1010-1015.Seccombe, J. A. (2007). Attitudes towards disability in an undergraduate nursing curriculum: A literature review. Nurse Education Today, 27, 459465
Narrative and Palliative Care Team Identity Formation
Get PDFPalliative care is whole person care that attends to the physical, psychosocial, and spiritual needs of persons with a serious or life-limiting illness. This care is provided by a team of clinicians from several disciplines including physicians, nurses, social workers, and chaplains. The palliative care team functions as a dynamic system whose ability to provide quality care is dependent upon the ability of the team members to form and maintain an ongoing collaborative alliance. This alliance requires that team members maintain dual commitments to both the care receivers and to their fellow team members. Just as persons with illness express the human propensity toward meaning making in the face of suffering, so palliative care teams thrive when they are supported in reflective processes that enhance their ability to find meaning in their work. Creation of and attention to team narratives and their role in team identity formation can enhance team members’ flourishing by placing team identity in the context of a larger story. Narratives of rescuing and fixing foster a sense of control and expertise while narratives of containing and healing nurture attention to mindful presence and human-to-human encounter