Open Access. Powered by Scholars. Published by Universities.®
Social and Behavioral Sciences Commons™
Open Access. Powered by Scholars. Published by Universities.®
Articles 1 - 10 of 10
Full-Text Articles in Social and Behavioral Sciences
Research Imitates Life: Researching Within Your Lived Experience, Bethany Donaghy, Delane Linkiewich
Research Imitates Life: Researching Within Your Lived Experience, Bethany Donaghy, Delane Linkiewich
Patient Experience Journal
This personal narrative article seeks to bring awareness to and provide an overview of the various aspects that come with being a lived experience researcher including the host of benefits and challenges that come with conducting research within one's own area of lived experience. Throughout this narrative, we (Bethany Donaghy, an autistic person, and Delane Linkiewich a person living with chronic pain) share our perspectives on what it is like to be lived experience researchers. Our narratives discuss how the many identities we hold both improve the impact and relevance of our research while also posing challenges for us like …
The Case For Patient-Reported Pleasure, Preston Long, Tanja Stamm
The Case For Patient-Reported Pleasure, Preston Long, Tanja Stamm
Patient Experience Journal
Pleasure is a cornerstone of human behavior. Its lack of consideration in the medical sciences has been to the detriment of all patients. The process of including pleasure as a medical outcome has multiple beginnings. A health-related pleasure scale must be developed for clinical purposes and original research must be conducted to establish the added value of measuring pleasure. Treatment comparisons, prediction models for recovery, side-effect investigations, and more may benefit from the collection of patient-reported pleasure. Furthermore, simply inquiring about a patient’s pleasure may serve as a positive intervention by giving them permission to discuss more than the illness …
Caregiver Burden: Support Needed For Those Who Support Others And The National Health Service, Michael Stephanou
Caregiver Burden: Support Needed For Those Who Support Others And The National Health Service, Michael Stephanou
Patient Experience Journal
This literature review focuses on the complexities and inequalities of informal caregiving in the UK and was inspired by the story of the following individual: EL is a 68-year-old Caucasian lady who attended Movement Disorder Clinic and was diagnosed with Parkinson's Disease Dementia following many years of symptoms. The diagnosis came as a big relief to EL and her daughter (SL) who were eager to get treatment started as soon as possible. EL lives alone with SL and solely relies on her for care and support. SL does not have children and devotes her daily routine to looking after her …
Patient Experiences Through Head And Neck Cancer: Information Delivery Combatting Psychological Distress, Eleah Stringer Msc., Julian J. Lum Phd., Jonathan Livergant Dr., Andre Kushniruk Phd.
Patient Experiences Through Head And Neck Cancer: Information Delivery Combatting Psychological Distress, Eleah Stringer Msc., Julian J. Lum Phd., Jonathan Livergant Dr., Andre Kushniruk Phd.
Patient Experience Journal
As part of a larger study investigating the utility of electronic decision support tools for patients with head and neck cancer (HNC), this article describes the patient experience of receiving cancer treatment in British Columbia, Canada. It aims to give voice to the patient experience and recommend a model of psychological adjustment for clinicians and clinical service management to consider to refine patient centric care pathways for HNC. Based in phenomenology, semi-structured interviews were conducted with 12 survivors of HNC, audio-video recorded, and thematically analyzed. Three themes were identified: (1) patients have high, though varying information needs; (2) an emotional …
Treading Water: Coping With Uncertainty During A Novel Pandemic, Sachin Patel
Treading Water: Coping With Uncertainty During A Novel Pandemic, Sachin Patel
Patient Experience Journal
The abruptness with which the COVID-19 pandemic has changed the delivery of healthcare will have a lasting effect on patients and families of intensive care unit survivors. Using the best science and epidemiology healthcare systems developed protocols and policies to implement the highest level of care but mitigate disease spread. Out of these initiatives the “no visitor” policy was born. The impact of COVID-19 causing florid respiratory failure immediately derailed the lives of a happily retired couple. While on mechanical ventilation for sixteen days, Betty was unable to connect with her husband of over 40 years. In that time, the …
A Sociotechnical Systems Approach Toward Tailored Design For Personal Health Information Management, Nicole E. Werner, Michelle Tong, Dan Nathan-Roberts, Catherine Smith, Ross Tredinnick, Kevin Ponto, Marijke Melles, Peter Hoonakker
A Sociotechnical Systems Approach Toward Tailored Design For Personal Health Information Management, Nicole E. Werner, Michelle Tong, Dan Nathan-Roberts, Catherine Smith, Ross Tredinnick, Kevin Ponto, Marijke Melles, Peter Hoonakker
Patient Experience Journal
We used a sociotechnical systems approach—which conceptualizes a system of interacting people, technologies, and tasks, to identify individual differences in personal health information management (PHIM) that can inform the design of patient-friendly environments, tools, and technologies. We conducted a secondary thematic analysis of data collected as part of a parent project, vizHOME. The goal of vizHOME was to improve health and health outcomes through identifying key features in the environment that will inform the design of consumer health information technology HIT. We analyzed interview data collected from 20 individuals with diabetes. We found seven dimensions of PHIM: (1) level of …
How Do Healthcare Staff Respond To Patient Experience Feedback Online? A Typology Of Responses Published On Care Opinion, Lauren Paige Ramsey, Laura Sheard Dr, Rebecca Lawton Professor, Jane O'Hara Dr
How Do Healthcare Staff Respond To Patient Experience Feedback Online? A Typology Of Responses Published On Care Opinion, Lauren Paige Ramsey, Laura Sheard Dr, Rebecca Lawton Professor, Jane O'Hara Dr
Patient Experience Journal
Patients are increasingly describing their healthcare experiences publicly online. This has been facilitated by digital technology, a growing focus on transparency in healthcare and the emergence of a feedback culture in many sectors. Due to this area being previously unexplored, the objective of this study was to identify a typology of responses that healthcare staff provide on Care Opinion (www.careopinion.org.uk), a not-for-profit online platform on which patients are able to provide narrative feedback about health and social care in the UK. Framework analysis was used to qualitatively analyse a purposive sample of 486 stories regarding hospital care, and their 475 …
Barriers And Facilitators To Family Participation In The Care Of Their Hospitalized Loved Ones, Lynda Bélanger, Marie Desmartis, Martin Coulombe
Barriers And Facilitators To Family Participation In The Care Of Their Hospitalized Loved Ones, Lynda Bélanger, Marie Desmartis, Martin Coulombe
Patient Experience Journal
This study’s objective was to better understand family members’ experiences in order to identify how healthcare organizations can facilitate their participation in the care of a hospitalized loved one. Eighteen individuals at the bedside of a hospitalized loved one were interviewed individually. Roles at the bedside and factors that facilitated their participation or represented barriers were examined. A qualitative analysis using a mixed inductive/deductive approach was performed. Reassurance and emotional support, as well as sharing information with the healthcare team emerged as main roles. Quality and timeliness of the information received about the patient’s condition, prognosis and changes in medical …
Reconnecting The Mind And Body: A Pilot Study Of Developing Compassion For Persistent Pain, Sarah L. Parry Dr, Zoey Malpus Dr
Reconnecting The Mind And Body: A Pilot Study Of Developing Compassion For Persistent Pain, Sarah L. Parry Dr, Zoey Malpus Dr
Patient Experience Journal
As an alternative to the more typical cognitive behavioural approach to pain management, a novel pain management group based on the principles of compassionate mind training was developed for a particular sub-group of patients. Participants were patients of a community pain clinic, who were invited to participate in this alternative approach to pain management. The eight-week Compassion in Pain Groups included psychoeducation around persistent pain, the underlying principles of compassionate mind training, practical exercises such as diaphragmatic breathing, followed by a series of compassionate imagery exercises and group discussions. Both quantitative and qualitative analyses were undertaken to gain further insights …
Beyond Patient-Centered Care: Enhancing The Patient Experience In Mental Health Services Through Patient-Perspective Care, Timothy A. Carey Prof
Beyond Patient-Centered Care: Enhancing The Patient Experience In Mental Health Services Through Patient-Perspective Care, Timothy A. Carey Prof
Patient Experience Journal
Delivering mental health services as patient-centered care has been an international priority for more than 50 years. Despite its longevity there is still not widespread agreement regarding how it should be defined or how it should guide the delivery of services. Generally, though, prioritizing the patient’s values and preferences seem to be at the core of this particular approach. It is not clear, however, that services attend to patient values and preferences as closely as they should. Terms such as “treatment resistant” and “noncompliant” seem to belie an attitude where the therapist’s opinion is privileged rather than the patients. To …