Palliative Care Commons^™

“You May Not Appreciate This Now, But You May Later”: A Qualitative Analysis Of The Impact And Meaning Of Legacy Interventions As Defined By Bereaved Parents, Stephanie Barta, Cassandra Matz, Stephany Griswold, Foster Rosemund, Caroline Boyd, Sarah Scott, Eileen Auer Bennett, Jennifer Staab

Patient Experience Journal

The death of a child is a significant event that affects the family system. Families of dying children need comprehensive support to help them cope with their trauma and loss. However, there is little research that examines parental preferences and grieving support needs. This study explored bereaved parent mentors' perspectives on legacy interventions to identify preferences and guide best practices for legacy interventions provided by pediatric staff. Legacy interventions can be defined as a practice that encourages families to process, create, and reflect on their experiences, stories, and memories. Six parents whose child died ≥2 years ago and who volunteered …

Meaningful Engagement Of Patients And Families In A Complex Trial Of Advance Care Planning In Primary Care, Angela K. Combe, Deborah L. Dokken, Mary M. Minniti, Annette M. Totten

Patient Experience Journal

Engagement of Patient and Family Advisors (PFAs) is increasingly recommended as best practice in research. During the design and conduct of a large trial of advance care planning (ACP) in primary care, we expanded on the funder’s (Patient-Centered Outcomes Research Institute®) requirement for an engagement plan and sought to develop an innovative approach to fostering and sustaining meaningful engagement of PFAs throughout all phases of the trial. Structures were developed that integrated PFAs into planning and provided the foundation for their ongoing participation. A continuous quality improvement approach became the framework for ongoing engagement. This involved setting goals; collecting data …

Asking The Question ‘What Matters To You?’ In A London Intensive Care Unit, Harriet Pittaway, Laura White, Karen Turner, Angelique Mcgillivary

Journal of Patient-Centered Research and Reviews

Purpose: At the heart of the paradigm shift in approach to patient care from paternalism toward shared decision-making lies the international “What Matters To You?” (WMTY) movement. However, WMTY principles are not frequently applied to the critical care setting. The aim of this quality improvement project work was to design and integrate a tool for all patients admitted to the intensive care unit (ICU) that helped answer WMTY.

Methods: Using Plan-Do-Study-Act (PDSA) methodology across 8 cycles, a multidisciplinary team designed and integrated a bedside poster into the ICU. Quantitative and qualitative data were collected via a bedside audit process on …

When Healthcare Leadership And Philanthropy Lead To An Improved Patient Experience: The Paul Lepsoe Music Initiative, Sara Olivier Rn Bscn Mn, Corianne Bell Ba Mus, Cheryl Jones Registered Psychotherapist, Mta, Phd, Jerry M. Maniate Md, M.Ed, Frcpc, Facp

Patient Experience Journal

Through an unprecedented collaboration between an academic acute tertiary care hospital (The Ottawa Hospital (TOH) and a community-based professional orchestra (Ottawa Symphony Orchestra (OSO), the Paul Lepsoe Music Initiative represented an innovative partnership focused on improving patient care via (a) the integration of live music in waiting areas of the hospital’s Cancer Center and (b) the creation of individualized music therapy interventions on the inpatient Palliative Care Unit. Patient, family, and volunteer/staff feedback further refined the intervention throughout the duration of the Initiative; a qualitative process that provided insight into the overall patient experience and opportunities for patients and families …

End Stage Kidney Disease Patient Experiences Of Renal Supportive Care In An Australian Teaching Hospital: A Qualitative Study, Eloise Sobels, Megan Best, Steve Chadban, Riona Pais

IES Papers and Journal Articles

Context

Renal Supportive Care Services (RSCS) were introduced in Australia to provide patient-centred care with a focus on better symptom management and improved quality of life in end stage kidney disease (ESKD) patients managed with or without dialysis. While RSCS have demonstrated clinical benefits with reduced length of hospital stay and symptom burden, there is a gap in understanding the experience of patients referred to RSCS.

Objectives

To identify patient attitudes, beliefs, and perspectives on the RSCS.

Methods

Qualitative interviews were conducted with 20 participants from both dialysis and conservative treatment pathways. Transcripts were then thematically analysed and primary themes …

Finding Common Threads: How Patients, Physicians And Nurses Perceive The Patient Gown, Christy M. Lucas, Cheryl Dellasega

Patient Experience Journal

Evidence-based care is standard practice in medicine, but the patient gown has fallen outside the scope of scholarly research. The current gown renders a patient vulnerable, diminishing patients’ sense of identity, agency, and dignity with its one-size-fits-none design. The impact on providers is similarly neglected. Our objective was to explore how patients and providers derive meaning from patient gowns. A convenience sample at an academic medical center was interviewed utilizing a standardized framework developed by a medical student and two PhD-prepared researchers with experience in qualitative methods. The study was inductive in nature, seeking to understand perceptions of the patient …