This qualitative study sought to answer three questions: What is it like to live with rotator cuff tendinopathy? What are the barriers and facilitators of a healthy lifestyle with an aging shoulder? And, what are the outcomes that matter most to people seeking care for rotator cuff tendinopathy? Patients diagnosed with rotator cuff tendinopathy participated in group discussions using semi-structured guides that focus on diagnosis, daily experiences living with rotator cuff tendinopathy, goals, concerns, and clinical care experiences. A hybrid of initial inductive coding of themes and subsequent deductive consideration of these themes within the capability, comfort, and calm framework was utilized. Themes associated with rotator cuff tendinopathy were less restful sleep, difficulty with work and life transitions, loss of baseline abilities, and limitation in social roles in the capability realm; physical pain, despair, and loneliness in the comfort realm; and lack of direction or progress and feeling uncared for in the calm realm. Barriers identified included: the sense that rotator cuff tendinopathy is something correctable rather than age-associated and the sense that painful activities will make the tendinopathy worse (common misconceptions); tenuous relationships and limited trust with clinicians; loss of hope; and a sense that care is directionless. What matters most to a person seeking specialty care for shoulder pain are feeling that they are getting effective care and not being dismissed; maintaining meaningful activity and life roles; and replacing despair and frustration with hope and progress. Anticipating these needs may facilitate the design of more effective care models. Level of Evidence: N/A.

Background When assessing the value of an intervention in bipolar disorder, researchers and clinicians often focus on metrics that quantify improvements to core diagnostic symptoms (e.g., mania). Providers often overlook or misunderstand the impact of treatment on life quality and function. We wanted to better characterize the shared experiences and obstacles of bipolar disorder within the United States from the patient’s perspective. Methods We recruited 24 individuals diagnosed with bipolar disorder and six caretakers supporting someone with the condition. Participants were involved in treatment or support services for bipolar disorder in central Texas. As part of this qualitative study, participants discussed their everyday successes and obstacles related to living with bipolar disorder during personalized, open-ended interviews. Audio files were transcribed, and Nvivo software processed an initial thematic analysis. We then categorized themes into bipolar disorder-related obstacles that limit the patient’s capability (i.e., function), comfort (i.e., relief from suffering) and calm (i.e., life disruption) (Liu et al., FebClin Orthop 475:315–317, 2017; Teisberg et al., MayAcad Med 95:682–685, 2020). We then discuss themes and suggest practical strategies that might improve the value of care for patients and their families. Results Issues regarding capability included the struggle to maintain identity, disruptions to meaningful employment, relationship loss and the unpredictable nature of bipolar disorder. Comfort related themes included the personal perception of diagnosis, social stigma and medication issues. Calm themes included managing dismissive doctors, finding the right psychotherapist and navigating financial burdens. Conclusions Qualitative data from patients with bipolar disorder helps identify gaps in care or practical limitations to treatment. When we listen to these individuals, it is clear that treatments must also address the unmet psychosocial impacts of the condition to improve patient care, capability and calm.

The experiences of care of people with lived experience of homelessness are rarely embraced to change care delivery. We conducted qualitative group and one-on-one interviews utilizing experience group methodology with 27 people with lived experience of homelessness currently housed in one permanent housing community in central Texas. We analyzed data using an inductive thematic approach to identify shared obstacles and barriers to receiving health care. We then analyzed findings with the capability, comfort, and calm value framework to identify health outcomes that matter most to study participants. Poor access to care, discontinuities in care, distrust in providers, and confusing terminology were identified as the biggest barriers to health. The overwhelming majority of experiences reflected poor health outcomes of calm, the outcome of a health care experience that adds ease to one’s life rather than logistical and administrative chaos. We propose three practical approaches to achieve calm for this population as follows: systems-level embracement of compassionate care, integration of relationship-based care navigation into all levels of care, and building efficient transportation into care design. We conclude that designing health care that works in the lives of people with lived experience of homelessness is critical to address the gaps in care that fuel the health disparity these individuals face compared to people without this lived experience.

No abstract

Introduction: With advances in care, an increasing number of individuals with single-ventricle congenital heart disease (SVCHD) are surviving into adulthood. Partners of individuals with chronic illness have unique experiences and challenges. This pilot qualitative research study explores the lived experiences of partners of individuals with SVCHD. Methods: Partners of SVCHD patients ≥18 years were recruited and participated in Experience Group (EG) sessions and 1:1 interviews. EG sessions are lightly moderated groups that bring together individuals with similar experiences and place them as the experts to discuss lived experiences. Formal qualitative coding was performed to identify salient themes. Results: A total of 6 partners, 4 male, 4 married and all partners of someone of the opposite sex, participated. Themes identified included uncertainty of their partners future health and mortality, becoming a lay SVCHD specialist, balancing multiple roles, and providing positivity and optimism.(Table) Participants expressed a steep learning curve initially, which transforms into a strong understanding of the condition. Over time they took on the advocacy role as a repository of medical history and navigating the health system, which is often a role of parents of younger SVCHD patients. They struggled with taking on the role of primary medical caregiver of their partner while managing greater responsibility at home, and changes to their role as a spouse and a parent. Despite the uncertainties, participants described many facets of championing positivity and optimism for the future for their partner. Conclusions: In this first of its kind pilot study, partners of individuals with SVCHD expressed unique challenges and experiences in their lives. There is a tacit need to design strategies to help partners of SVCHD patients cope with those challenges. Further larger-scale research is required to better understand the experiences of this unique population.