Turning toward suffering: Rethinking the patient- clinician relationship in physical therapy practice.

In this professional theoretical article, the authors argue that patient care should be centered on connection and that authentically turning toward suffering necessitates an approach to care that transcends medicine's traditional focus on cure and physical restoration and differentiates between pathology and disability. The meaning of illness and suffering for those who have experienced life-changing injuries or illness is explored. Strategies for approaching the lifeworld of these individuals are discussed using the concepts of phenomenology and embodiment, rooted in the work of philosophers from the phenomenological tradition. The authors also propose an approach to patient care offering a case-based example based on postmodernist concepts that elevate connection, relationship, and interdependency above the traditional focus of restoring normality and physical independence for individuals with disabilities. Traditional assumptions about quality of life, illness, and disability are called into question by focusing on the fluidity of being and disability identity, which serves to destabilize static, binary conceptions of individuals as either healthy or ill, disabled, or able-bodied. A postmodern lens invites healthcare practitioners to envision themselves as part of an assemblage that may promote a more expansive view of the relationship between patient and healthcare practitioner.

Physical and Psychological Burden among Caregivers of Latinx Older Adults with Stroke and Multimorbidity.

Objective: To investigate the association between Latinx older adults' stroke, multimorbidity, and caregiver burden. Methods: For this retrospective cohort study, we used the Hispanic Established Populations for the Epidemiologic Study of the Elderly (H-EPESE) Wave-7 data set. The caregiver's physical burden was defined by using the Level of Burden Index. The caregiver's psychological burden was measured by using the Perceived Stress Scale (PSS-4). Multimorbidity was defined as the presence of 3 or more chronic conditions. Results: The average age of the Latinx adults was 86 years, and the caregivers were 56 years. Latinx older adults and caregivers were more likely to be females (66% and 75%). Most caregivers were children (71%). Twelve percent of Latinx older adults presented with stroke, and 50% presented with multimorbidity. Caregiver physical burden was stratified into 3 levels: low (43%), medium (17%), and high (40%) burden. The cumulative logit model revealed that caregivers caring for those with stroke or multimorbidity had a high physical burden. Family caregivers and caregivers with a higher household income had a low physical burden. Caregivers with multimorbidity had a higher psychological burden. Caregivers who were interviewed in Spanish and those with higher household incomes had decreased psychological burden. Conclusion: This study revealed that caregivers had a higher physical burden among caregivers of Latinx adults with stroke or multimorbidity. Future studies must investigate the relationship between Latinx adults' stroke and caregiver psychological health, and build culturally tailored policies and community interventions to support caregivers susceptible to high stress and burden.

Implementing Home-Based Clinical Research for Caregivers and Persons with Stroke: Lessons Learned.

Conducting research in the home environment presents challenges related to setting, study participants, methods, and researchers. Researchers should be aware of potential challenges to ensure rigor and improve planning for future studies. This paper describes difficulties experienced and lessons learned when conducting a two-group, randomized pilot study (n = 32) of a web-based intervention (Carepartner and Constraint-Induced Therapy [CARE-CITE]) designed to foster positive carepartner engagement in home-based activities to improve upper extremity function in persons with stroke. Challenges and issues included: 1) recruitment and referral, 2) data collection in the home setting, 3) participants' understanding of the rationale for adhering to constraint-induced movement therapy principles (wearing mitt on the less-affected limb), 4) tracking adherence of upper extremity practice time, 5) participant-driven goal setting, 6) potentially unsafe participant practice activities, 7) home visit safety, 8) encouraging versus controlling-using autonomy support, 9) participant needs beyond study scope, and 10) ethical safeguards for addressing depressive symptoms. Researchers can incorporate suggested strategies to support methodological rigor and facilitate interventions engaging carepartners in the rehabilitation process when planning for research in the home environment.

Evaluation of a Carepartner-Integrated Telehealth Gait Rehabilitation Program for Persons with Stroke : Study Protocol for a Feasibility Study.

Background: Despite family carepartners of individuals post-stroke experiencing high levels of strain and reduced quality of life, stroke rehabilitation interventions rarely address carepartner well-being or offer training to support their engagement in therapeutic activities. Our group has developed creative intervention approaches to support families during stroke recovery, thereby improving physical and psychosocial outcomes for both carepartners and stroke survivors. The purpose of this preliminary clinical trial is to test the feasibility of an adapted, home-based intervention (Carepartner Collaborative Integrative Therapy for Gait-CARE-CITE-Gait) designed to facilitate positive carepartner involvement during home-based training targeting gait and mobility. Methods: This two-phased study will determine the feasibility of CARE-CITE-Gait, a novel intervention developed by our team that leverages principles from our previous carepartner-focused upper extremity intervention. During the 4-week CARE-CITE-Gait intervention, carepartners review online video-based modules designed to illustrate strategies for an autonomy-supportive environment during functional mobility task practice, and the study team completes two 2-hour (home-based) visits for dyad collaborative goal setting. In Phase I, the usability and acceptability of the CARE-CITE-Gait modules will be evaluated by stroke rehabilitation content experts and carepartners. In Phase II, feasibility (based on measures of recruitment, retention, and intervention adherence) will be measured. Preliminary effects of the CARE-CITE-Gait will be gathered using a single-group, evaluator blinded, quasi-experimental design with repeated measures (two baseline visits one week apart, post-test, and one-month follow-up) with 15 carepartner and stroke survivor dyads. Outcomes include psychosocial variables (strain, family conflict surrounding stroke recovery, autonomy support and life changes) collected from carepartners, and measures of functional mobility, gait speed, stepping activity, and health-related quality of life collected from stroke survivors. Discussion: The findings of the feasibility testing and preliminary data on the effects of CARE-CITE-Gait will provide justification and information to guide a future definitive randomized clinical trial. The knowledge gained from this study will enhance our understanding of and aid the development of rehabilitation approaches that address both carepartner and stroke survivor needs during the stroke recovery process. Trial Registration: ClinicalTrials.gov, NCT05257928. Registered 25 February 2022, https://clinicaltrials.gov/ct2/show/NCT05257928.

Evaluation of a carepartner-integrated telehealth gait rehabilitation program for persons with stroke: study protocol for a feasibility study.

BACKGROUND: Despite family carepartners of individuals post-stroke experiencing high levels of strain and reduced quality of life, stroke rehabilitation interventions rarely address carepartner well-being or offer training to support their engagement in therapeutic activities. Our group has developed creative intervention approaches to support families during stroke recovery, thereby improving physical and psychosocial outcomes for both carepartners and stroke survivors. The purpose of this study is to test the feasibility of an adapted, home-based intervention (Carepartner Collaborative Integrative Therapy for Gait-CARE-CITE-Gait) designed to facilitate positive carepartner involvement during home-based training targeting gait and mobility. METHODS: This two-phased design will determine the feasibility of CARE-CITE-Gait, a novel intervention that leverages principles from our previous carepartner-focused upper extremity intervention. During the 4-week CARE-CITE-Gait intervention, carepartners review online video-based modules designed to illustrate strategies for an autonomy-supportive environment during functional mobility task practice, and the study team completes two 2-h home visits for dyad collaborative goal setting. In phase I, content validity, usability, and acceptability of the CARE-CITE-Gait modules will be evaluated by stroke rehabilitation content experts and carepartners. In phase II, feasibility (based on measures of recruitment, retention, intervention adherence, and safety) will be measured. Preliminary effects of the CARE-CITE-Gait will be gathered using a single-group, quasi-experimental design with repeated measures (two baseline visits 1 week apart, posttest, and 1-month follow-up) with 15 carepartner and stroke survivor dyads. Outcome data collectors will be blinded. Outcomes include psychosocial variables (family conflict surrounding stroke recovery, strain, autonomy support, and quality of life) collected from carepartners and measures of functional mobility, gait speed, stepping activity, and health-related quality of life collected from stroke survivors. DISCUSSION: The findings of the feasibility testing and preliminary data on the effects of CARE-CITE-Gait will provide justification and information to guide a future definitive randomized clinical trial. The knowledge gained from this study will enhance our understanding of and aid the development of rehabilitation approaches that address both carepartner and stroke survivor needs during the stroke recovery process. TRIAL REGISTRATION: ClinicalTrials.gov, NCT05257928. Registered 25 February 2022. TRIAL STATUS: This trial was registered on ClinicalTrials.gov (NCT05257928) on March 25, 2022. Recruitment of participants was initiated on May 18, 2022.