Promoting Resilience After Stroke in Dyads (ReStoreD): A Supplemental Analysis.

OBJECTIVE: To examine preliminary effects of ReStoreD (Resilience after Stroke in Dyads) on resilience in couples coping with stroke-related challenges. DESIGN: Supplemental analysis of prospective pilot trial with pre-/post-assessments and 3-month follow-up. SETTING: Community. PARTICIPANTS: Thirty-four cohabitating stroke-care partner dyads (N=34); at least 3 months post-stroke. INTERVENTIONS: 8-week self-administered dyadic intervention (ReStoreD) consisting of activities completed individually and as a couple. MAIN OUTCOME MEASURES: 10-item Connor-Davidson Resilience Scale. RESULTS: Care partner baseline resilience scores were significantly higher than persons with stroke scores. Repeated-measures analysis of variance suggest significant pre-post improvement in resilience for persons with stroke (mean difference [I - J]=-2.42, SE=.91, P=.04, 95% CI [-4.75, -0.08]) with a large effect size (η2=.34), which was maintained at 3-month follow-up. Care partners showed no significant change over time. CONCLUSIONS: This study provides preliminary evidence that ReStoreD improves resilience in persons with stroke. More research is needed to address resilience in care partners. These findings represent a promising first step to address the mental health needs in this population.

Piloting GETCare: A Goal-Based Education and Skills Training Program for Caregivers.

PURPOSE: Many individuals with stroke require informal caregiver support. These caregivers are often unprepared and overwhelmed. This study assesses the feasibility and acceptability of GETCare, a remote Goal-based Education and skills Training program for Caregivers caring for an individual poststroke. DESIGN: Single-arm mixed-methods pilot trial was performed. METHODS: The GETCare program is a 5-week remote, individually administered program for informal stroke caregivers that includes education, skills training, guided goal setting, and resource recommendations. Quantitative data were analyzed using descriptive statistics and qualitative data via a deductive approach. RESULTS: Twenty-eight caregivers were recruited with 18 caregivers completing the program. These 18 caregivers reported high satisfaction, and over 75% reported program content was at least quite helpful. Caregivers suggested that the length of the program was appropriate, indicated that weekly check-ins were helpful, and supported this program for informal caregivers across the time trajectory poststroke. Eight of 10 caregivers who dropped out of the program were caring for someone 0-4 months poststroke. CONCLUSIONS: Caregivers positively received the GETCare program, which was uniquely structured to provide resources and skills for this high-need population. This pilot study provides valuable insight for future remote interventions poststroke. CLINICAL RELEVANCE TO PRACTICE OF NURSING: Results provide foundational knowledge in how to better support caregivers through guided goal setting and individualized education.

Intimate Relationships and Stroke: Piloting a Dyadic Intervention to Improve Depression.

Stroke affects not only the survivor but also their romantic partner. Post-stroke depression is common in both partners and can have significant negative consequences, yet few effective interventions are available. The purpose of this study was to pilot test a novel 8-week remotely administered dyadic intervention (ReStoreD) designed to help couples better cope with stroke-related changes and reduce depressive symptoms. Thirty-four cohabitating survivor-partner dyads at least 3 months post-stroke and reporting some changes in mood were enrolled. Depressive symptoms were assessed pre- and post-intervention and at 3-month follow-up. Repeated measures analysis of variance was used to assess the effects of ReStoreD over time on depressive symptoms in stroke survivors and their partners. Twenty-six dyads completed the study. Although statistical significance was not reached, there was a large effect size for improvements in depressive symptoms for stroke survivors. There was no significant improvement for partners, and the effect size was minimal. Those with more significant depressive symptoms at baseline were more likely to benefit from the intervention. This pilot study established proof-of-concept by demonstrating that depressive symptoms can be lessened in stroke survivors and partners with more severe depressive symptoms. Future research will establish the efficacy of the intervention in a fully powered study.

Linking AM-PAC Cognition to PROMIS Cognitive Function.

OBJECTIVE: To link the Activity Measure for Post-Acute Care (AM-PAC) Applied Cognition to the Patient-Reported Outcomes Measurement Information System (PROMIS) Cognitive Function, allowing for a common metric across scales. DESIGN: Cross-sectional survey study. SETTING: Outpatient rehabilitation clinics. PARTICIPANTS: Consecutive sample of 500 participants (N=500) aged ≥18 years presenting for outpatient therapy (physical, occupation, speech). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: AM-PAC Medicare and Generic Cognition short forms and PROMIS Cognitive Function items representing the PROMIS Cognitive Function item bank. RESULTS: The calibration of 25 AM-PAC cognition items with 11 fixed PROMIS cognitive function item parameters using item-response theory indicated that items were measuring the same underlying construct (cognition). Both scales measured a wide range of functioning. The AM-PAC Generic Cognitive assessment showed more reliability with lower levels of cognition, whereas the PROMIS Cognitive Function full-item bank was more reliable across a larger distribution of scores. Data were appropriate for a fixed-anchor item response theory-based crosswalk and AM-PAC Cognition raw scores were mapped onto the PROMIS metric. CONCLUSIONS: The crosswalk developed in this study allows for converting scores from the AM-PAC Applied Cognition to the PROMIS Cognitive Function scale.

Psychometric properties of a brief self-reported health-related quality of life measure (HRQoL-IDD) for persons with intellectual and developmental disabilities.

BACKGROUND: To encourage self-determination and address health disparities among persons with intellectual and developmental disabilities, clinicians and researchers rely on self-reported measures like health-related quality of life (HRQoL). This study evaluated the psychometric properties of a theory-driven self-reported HRQoL measure for adults requiring mild to moderate support related to intellectual and developmental disabilities. METHOD: 224 volunteers completed 42 quality of life items developed with extensive input from persons with intellectual and developmental disabilities, family members/caregivers, and providers. The 5-point Likert scale format with visual images of fluid-filled cups represented the range of responses. RESULTS: Exploratory and Unrestricted Factor Analyses yielded 16 HRQoL items with 4 subscales: Functional Well-Being, Emotional Well-Being, Social Well-Being, and Healthy Decision-making. The HRQoL-IDD explained 62.8% of variance, had satisfactory internal consistency (0.73-0.83), stability of reponses, and reading level (2nd grade, ages 7-8). CONCLUSIONS: The HRQoL-IDD is a promising measure of self-reported HRQoL for use in community-based settings for persons requiring mild to moderate support related to intellectual and developmental disabilities.

Development of a novel positive psychology-based intervention for couples post-stroke.

OBJECTIVE: Stroke provides challenges for survivors and partner caregivers. Stroke survivors and caregivers are interconnected in their emotional health, including depression, a common stroke sequelae. The purpose of this study was to develop and test the feasibility of a dyadic positive psychology-based intervention (PPI) for couples coping poststroke. DESIGN: Community-dwelling couples consisted of 1 partner who had a stroke ≥6 months ago and a cohabiting partner caregiver. One or both partner(s) had to report depressive symptoms. The PPI consisted of 1 brief face-to-face training session and an 8-week self-administered intervention in which participants were instructed to engage in at least 2 activities alone and 2 together each week. Two dyads were randomly assigned to a waitlist control to test feasibility of this process. Baseline, postintervention, and 3-month follow-up assessments and post-program feedback were obtained. Descriptive statistics were used to analyze sample characteristics, recruitment and retention rates, adherence, key pre- and postintervention outcomes, and satisfaction with the intervention. RESULTS: Eleven of 20 couples responding to recruitment letters were enrolled in the study. Ten of 11 dyads completed the program. All participants engaged in activities for at least 6 of 8 weeks. Feedback data indicated participant satisfaction with the intervention, and key outcome measures demonstrated adequate variability. CONCLUSIONS: The self-administered dyadic PPI is feasible for implementation with couples poststroke. The PPI represents a first step in a novel dyadic approach in this population. Recruitment, enrollment and attrition rates, and feedback will be used to inform a larger randomized trial. (PsycINFO Database Record

Measurement considerations for achieving equity in research inclusion for transition-aged youth with disabilities.

Measuring health for youth with intellectual disabilities (ID) is important for tracking progress toward national health goals. Measures of biophysical and fitness indicators are important but difficult to obtain in youth with ID, particularly in community settings. This paper describes obstacles encountered and strategies used to measure outcomes in a community-based study. Proposed best practices include adaptations in procedures to maximize comprehension; preparation of the environment to provide privacy and predictability; and appropriately sized equipment to obtain accurate readings. Reliable and valid measures, specific to youth with ID, would improve promote research inclusion and reduce health disparities for this population.

Reframing Health Promotion for People With Intellectual Disabilities.

The World Health Organization calls for health promotion to expand beyond the health care system by considering social determinants of health, engaging multiple levels, targeting policy change, and including social action. This qualitative study embraces this holistic stance as a means to address the health disparities and inequities experienced by people with intellectual disabilities (ID) by supporting the development of interventions that consider components of social justice along with embracing this population's potential and acknowledging influences of the context. A content analysis of the data is presented to illustrate how an occupational viewpoint can promote positive health and well-being of people with ID. The four gerunds of Wilcock's Occupational Perspective on Health-doing, being, belonging, and becoming-are utilized and supported by the literature to offer actions that can be taken by health promotion professionals to address the health needs of people with ID.

Construct validity of the functionally simulated technology task: an exploratory study.

This study explored the construct validity of the Functional Simulated Technology Task (FSTT), online bill-pay version. The FSTT was administered to matched groups: persons with cognitive impairment and persons with no known cognitive impairment, established through the Montreal Cognitive Assessment (MoCA). Results indicated significance for construct validity by discriminating between the two groups. Results also indicated a good to excellent positive relationship between scores on the MoCA and the FSTT score areas of Outcome, Quality, Process, and Independence. The findings support the use of the FSTT to measure executive function using a simulated online bill-pay task.

Effecting healthy lifestyle changes in overweight and obese young adults with intellectual disability.

We evaluated a 12-week recreation center-based healthy lifestyle intervention for 30 obese home-dwelling young adults (YA) with intellectual disabilities. Three cohorts participated: YA only, YA and parents, and parents only. The YA cohorts received a nutrition/exercise intervention; parents focused on modeling healthy lifestyle behaviors. Outcomes included YA blood, nutrition, anthropometric, and fitness measures at pre, post, and 3-month follow-up. Compared with wait-list controls, the YA-only cohort improved immediately postintervention in blood pressure (BP), weight, and balance (p < .05). At 3-month follow-up, no intervention was consistently superior; overall reductions in weight, BP, hip circumference, and exercise barriers were obtained (p < .05). Linear and curvilinear changes from baseline to 3 months after the intervention varied by outcome and participant. Participants with Down syndrome lost less weight.

"Still there is beauty": one man's resilient adaptation to stroke.

The study was designed to generate understanding of the phenomenon of resiliency following stroke, its role in supporting continuity of identity and ways in which occupational therapists might foster resiliency. The authors used a qualitative case study design to collect data during two face-to-face interviews. These were transcribed verbatim and analyzed using thematic analysis, narrative analysis, narrative smoothing, and content analysis using resiliency theory. The participant's narrative revealed resilient characteristics throughout his adaptive process including drawing upon positive social support, accessing spirituality, having an internal locus of control, building on past successes and a commitment to succeed, and having an action-oriented approach and positive personal goals for the future. Occupational therapists frequently interact with people following disability and have the opportunity to promote adaptation by identifying and fostering clients' resilient characteristics through narrative reconfiguration and other intervention approaches. Further research is needed to study facilitation of resiliency as a part of intervention to promote occupational engagement.