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Human Factors and Patient Self-Care
Published in Richard J. Holden, Rupa S. Valdez, The Patient Factor, 2021
Barrett S. Caldwell, Siobhan M. Heiden, Michelle Jahn Holbrook
This consideration of self-efficacy and proactive self-care in responding to chronic illness is acknowledged in the concept of the “expert patient” (Tattersall, 2002; Taylor & Bury, 2007). There are, within this concept, multiple elements of patient-contributed expertise and data integration associated with the process of living with chronic illness. At the very least, acknowledging that patients do have an active role in their own care and health status helps to engage and improve their health outcomes, including symptom management (Tattersall, 2002) and medication management (Mickelson et al., 2016). Especially when clinical care is fragmented or subject to multiple handoffs across diverse specialty clinicians, the patient or their informal caregiver(s) may bear the primary responsibility for maintaining information coordination and shared situation awareness across clinician groups (Heiden & Caldwell, 2018). This is not meant to suggest that healthcare professionals no longer have a role in healthcare delivery for chronic illness, as is sometimes suggested (Taylor & Bury, 2007). Patient self-advocacy in this sense represents a self-care skill of managing important health status signals with different meanings to different clinicians.
Understanding the Patient, Wellness, and Caregiving Work of Older Adults
Published in Rupa S. Valdez, Richard J. Holden, The Patient Factor, 2021
Abigail R. Wooldridge, Wendy A. Rogers
An important aspect in formal healthcare settings is advocating for self, especially by engaging in shared decision-making, to ensure one’s own goals are considered in developing the care regimen (Barry & Edgman-Levitan, 2012). The patient and caregiver(s) as well as healthcare professionals should be cognizant of the importance of shared decision-making and should all focus on supporting it. Self-advocacy is a very important role but may represent a significant change for older adults who have been socialized to the paternalistic model of medicine where the clinician determines the treatment plan without consulting the patient. Some technologies and education materials (e.g. decision aids, question lists/prompts, and training for patients) have been developed to support self-advocacy and shared decision-making for other patient populations (Mann et al., 2010; Mathers et al., 2012). These tools could be useful for older adults, with or without adaptation (e.g. change in form or format), and other tolls may also be developed.
Afterword
Published in Jamie White-Farnham, Bryna Siegel Finer, Cathryn Molloy, Women’s Health Advocacy, 2019
As women are told repeatedly, and as this book evidences, if we want to be treated well in healthcare settings, we must be good self-advocates (see especially Dean, Laux, and Tadros in this collection); however, self-advocacy, when it comes to healthcare, is more than having an empowered voice. When it comes to healthcare, self-advocacy requires an empowered voice backed by literate practices and rhetorical strategies. In other words, reading and writing are necessary for literal survival.
“You have to believe the patient”: What do people with fibromyalgia find helpful (and hindering) when accessing health care?
Published in Canadian Journal of Pain, 2023
Ria K. Nishikawara, Izabela Z. Schultz, Lee D. Butterfield, John W. Murray
Helping incidents in this category reflected participants’ agentic strategies to establish structure and knowledge that supported their well-being and helped manage their symptoms, often in response to perceived gaps in care, such as (a) information seeking and education: personal efforts in finding research and information; (b) self-advocacy: steps participants took in representing their own needs and interests to their health care providers, (c) social supports: participants’ social networks, including friends and family, who provided emotional and practical supports; (d) symptom management strategies: such as mindfulness, cognitive–behavioral strategies, and pain education, that participants used to manage their syptoms; and (e) other coping strategies: preparation, planning, spirituality, and creative practices.
Professional Considerations for Art Therapists Supporting the Work of People With Intellectual Disabilities
Published in Art Therapy, 2020
Sara Michelle Miller, Julie Ludwick, Cassandra Colucy Krcmar
Everyday practices of service providers and care facilities for people with ID are characterized by excessive control and overprotection, creating dependence on care professionals (van Nijnatten & Heestermans, 2012). These practices emerge from the assumption that people with ID are incompetent, an assumption that is disrupted by the self-determination and self-advocacy of people with ID. Self-advocacy is both a political movement and a personal philosophy of people who are seeking control over their own lives. To deconstruct power-over dynamics in the therapeutic relationship, self-reflexivity and cultural humility must be cultivated. We recommend that art therapists investigate their own experiences with—and relationship to—disability and disability identity in a parallel way. Art therapists ought to ask themselves: What encounters have I had with a disability, injury, aging, and illness? What are my attitudes and beliefs about competence and autonomy?
Medication adherence for persons with spinal cord injury and dysfunction from the perspectives of healthcare providers: A qualitative study
Published in The Journal of Spinal Cord Medicine, 2019
Sara J. T. Guilcher, Amanda C. Everall, Tejal Patel, Tanya L. Packer, Sander L. Hitzig, Aisha K. Lofters
Interestingly, participants who were from rehabilitation backgrounds commonly spoke about encouraging patients to self-advocate when speaking with physicians about medication concerns. Competing medical demands during appointments with constrained time may restrict opportunities for patients to speak about medication concerns. Previous research for persons with SCI/D has highlighted challenges with access to primary care (e.g. transportation, timely appointments).38,39 Traditional fee-for-service primary care models with time restraints on clinical encounters (e.g. one problem per visit) are problematic for persons with multimorbidity.40 Our findings reinforce the importance of holistic patient-centered care,41 that reflect the goals and needs of patients and caregivers in a welcoming non-time limited environment.