Introduction: Patient partnership has come to the forefront in health care practice and education, influencing professional programs and interprofessional education curricula. While students conceptually understand the idea of partnering with the patient, the practice of doing so is more challenging. Innovative ways to teach this health care approach may be effective in enabling students to apply their learning and promote enhanced patient partnerships. This resource provides an arts-based approach for exploring notions of partnerships with patients in a team context with interprofessional collaboration. Method: This 2-hour resource features a verbatim reader's theater script and accompanying discussion questions for a small-group reading and debrief activity. The voice of individuals with lived experience is elevated to enhance student learning and connection to the topic. Quotations were taken from interviews with individuals who had experience with the health care system and from health care providers. Results: The script and accompanying small-group discussion questions have been used in the interprofessional education curriculum with approximately 1,100 health profession students. Student response has been positive, indicating a new appreciation for thinking about partnering with patients. Discussion: Although the script has been used in the context of interprofessional education, it has the potential to be used as part of uniprofessional teaching and in practice environments, since understanding the nature of partnerships between practitioners and patients transcends all settings.
To enhance student learning, many health profession programs are embracing involvement of patients in their curricula, yet little is known about the impact of such an experience on patients.Objective:To understand the experiences of patients who contributed to the creation of a Verbatim Reader’s Theater used in health professions curriculum.Methods:A semi-structured interview was conducted with a focus group of 3 patients who participated in curriculum development. The interview was recorded, transcribed verbatim, and analyzed for themes using van Manen approach to hermeneutic phenomenology.Results:Five themes emerged: (1) contextualizing contribution, (2) addressing expectations, (3) changing health-care service delivery, (4) sharing common experiences, and (5) coordinating participation.Conclusion:Patients had a positive experience contributing to curriculum development and found meaning in sharing their lived experience to shape the values of future clinicians. Strategies to promote continued success in partnership between patients and health professional curriculum developers include clear communication about the project’s direction and early discussion of patient role and expectations.
BACKGROUND Children with medical complexity (CMC) represent a growing population in the paediatric healthcare system. CMCs’ multiple health needs, illness severity, and fragility lead to a high degree of caregiver burnout, parental employment loss, and other social and financial consequences. Healthcare providers must consider a holistic view of the family, including consideration of social determinants of health [SDOH]: socio-economic status, employment, quality of housing, availability of social support, and access to healthcare services. This study addresses a gap in current research by exploring how caring for a CMC exacerbates social inequalities, and how these challenges may be mitigated. OBJECTIVES 1. What are the SDOH impacting CMC and their families? 2. How do families report the impact of their child’s medical complexity on their social circumstances? DESIGN/METHODS A qualitative description approach was used to enable rich data collection through semi-structured interviews until thematic saturation was reached. Nine interviews were conducted with CMC caregivers who were chosen by purposeful sampling. The interview guide was developed by expert consultation and iteratively refined. Ethics approval and written consent were obtained. Interviews were recorded and transcribed verbatim. Three team members independently coded the interviews for recurrent themes to inform qualitative content analysis. RESULTS Caregiving for a CMC is all-consuming, requiring parents to take on roles including planner, medical professional, medical educator, and advocate. Parents of CMC report three major areas negatively impacted by caregiving: 1) physical and mental health; 2) personal relationships; and 3) finances. Additionally, three themes emerged describing enablers for resiliency: 1) the CMC’s health status when well or stable in hospital; 2) acceptance of one’s limitations as a caregiver and of the family’s ‘new normal’; and 3) broad supports including medical, personal, financial, and educational. CONCLUSION The wellbeing of CMC families is impacted by medical and social factors. An interdisciplinary model of care may offset some of the caregiver’s advocacy and medical educator responsibilities. Paediatricians can support families of CMC by providing comprehensive care for all components of the child’s health status, and by including routine assessment of the family’s SDOH. Finally, explicit discussion about parental expectations and caregiver burnout helps foster a positive therapeutic relationship with the family.
Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others’ support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.