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Caregivers of individuals with Alzheimer's disease require support across the full disease trajectory. The aim of this study was to develop a conceptual framework of caregiving phases across the Alzheimer's disease and caregiving trajectories and the corresponding caregiver support needs. Constructivist grounded theory informed data collection and analysis. 40 spousal (n = 20) and adult children (n = 20) caregivers were interviewed. Recruitment was completed when theoretical saturation was achieved. Member-checking interviews occurred with 10 participants. Participants described five phases of caregiving related to their responsibilities to support people with Alzheimer's disease including monitoring initial symptoms, navigating their diagnosis, assisting with instrumental activities of daily living, assisting with basic activities of daily living, and preparing for the future. Support (i.e., informational, emotional, instrumental, and appraisal) needs were often specific to the phase of care. For example, during the initial symptoms phase, caregivers reported needing information to assist them to distinguish normal aging from cognitive impairment. In contrast, during the preparing for the future phase, caregivers emphasized support for accessing institutional long term-care placement. Findings highlight caregiver-identified phases of caregiving and corresponding support needs across the Alzheimer's disease trajectory. Findings can inform the development, evaluation and implementation of programs and services to meet caregivers' changing needs across the disease trajectory. Caregivers for individuals with Alzheimer's disease can experience distinct caregiving phases across the disease trajectory with corresponding support needs. Rehabilitation clinicians can use these findings to help caregivers navigate available supports at appropriate times to ensure that their needs are addressed across the disease trajectory. Occupational therapists and other rehabilitation professionals can enable caregivers with timely education and support as they progress across the disease trajectory. [ABSTRACT FROM AUTHOR]

Objective: The aims were to validate linguistically British‐English versions of the Long‐Term Conditions Job Strain Scale (LTCJSS), Long‐Term Conditions Work Spillover Scale (LTCWSS) and Work‐Health‐Personal Life Perceptions Scale (WHPLPS) in rheumatoid arthritis, axial spondyloarthritis, osteoarthritis and fibromyalgia (FM). Methods: The three scales were forward translated and reviewed by an expert panel prior to cognitive debriefing interviews. Participants completed a postal questionnaire. Construct validity was assessed using Rasch analysis. Concurrent validity included testing between the three scales and work (e.g., Workplace Activity Limitations Scale [WALS]) and condition‐specific health scales. Two weeks later, participants were mailed a second questionnaire to measure test‐retest reliability. Results: The questionnaire was completed by 831 employed participants: 68% women, 53.5 (SD 8.9) years of age, with condition duration 7.7 (SD 8.0) years. The LTCJSS, LTCWSS and WHPLPS Parts 1 and 2 satisfied Rasch model requirements, but Part 3 did not. A Rasch transformation scale and Reference Metric equating scales with the WALS were created. Concurrent validity was generally good (rs = 0.41–0.85) for the three scales, except the WHPLPS Part 3. Internal consistency (Person Separation Index values) was consistent with group use in all conditions, and individual use except for the LTCWSS and WHPLSP Parts 1 and 2 in FM. Test‐retest reliability was excellent, with intraclass coefficients (2,1) of 0.80–0.96 for the three scales in the four conditions. Discussion: Reliable, valid versions of the British‐English LTCJSS, LTCWSS and WHPLPS Parts 1 and 2 are now available for use in the UK. [ABSTRACT FROM AUTHOR]

To characterize the breadth of challenges that people with IBD experience in the workplace and identify supports and accommodations that can help sustain employment. A scoping review was conducted using the Arksey and O'Malley framework. Electronic databases (MEDLINE, PsycINFO, CINAHL, EMBASE) and grey literature websites identified English-language studies published from inception through to June 2020. Studies where details were insufficient to extract the study purpose, sample, methods, and findings were deemed of poorer quality and excluded. Eighteen studies met selection criteria. Studies discussed common workplace challenges, including career planning, work performance, managing physical and cognitive symptoms, social impacts at work, and challenges related to the physical work environment and commuting. The range of workplace supports identified by studies was classified into five categories: flexibility, changes to the physical work environment, social support, self-management strategies, and extended health benefits. IBD research typically has been descriptive and focused on broad characterizations of workplace challenges and supports. Future work needs to examine causal pathways and assess the efficacy of workplace supports, as well as conduct subgroup analyses and develop resources to facilitate communication and accommodation planning between workers living with IBD and their employers. Rehabilitation professionals can play an important role in supporting people working with inflammatory bowel disease (IBD) by identifying accommodations and ways to make work environments more supportive. Providing rehabilitation support to people with IBD goes beyond symptom management and needs to consider the broader social, policy, and environmental challenges of employment. [ABSTRACT FROM AUTHOR]

Purpose: To understand the similarities and differences in the employment participation of people living with arthritis across the life course. Method: Focus groups and interviews were conducted with young (ages 18-34 years, n = 7), middle-aged (ages 35-54 years, n = 13) and older adults (>55 years, n = 25) with arthritis. Participants were asked about the impact of arthritis on employment, experiences with health-related changes, career progression and social role involvement. A modified grounded theory approach was used to inductively analyze the data. Results: Young adults indicated the school-to-work transition as being influential in their employment and described the need to direct their time and energy toward finding work that accommodated health and met career aspirations. Middle-aged adults described how the transition from good health to an arthritis diagnosis disrupted involvement in diverse social roles. However, they often downplayed the impact of arthritis on employment. Older adults described the work-to-retirement transition and their decline in physical functioning as contributing to changing involvement in the labor market. Conclusion: Transitions related to health, career progression and social role involvement shaped employment experiences, and represent opportunities for future research and practice that is tailored to life course issues. Implications for rehabilitation: Little is known about the work experiences of young- and middle-aged adults with arthritis and how they compare to their older counterparts. Life course theory offers an important framework for research and practice by providing a perspective to enhance our understanding of how employment participation differs across phases of life. Salient and diverse changes related to health, career and social role involvement were identified at each life phase and shaped employment. Rehabilitation practitioners should pay special attention to a client’s age, life phase and work history as a strategy to enhance the delivery of interventions that promote work participation. [ABSTRACT FROM AUTHOR]

Objective: Examine feasibility of conducting a randomized controlled trial of the Timing it Right Stroke Family Support Program (TIRSFSP) and collect pilot data. Design: Multi-site mixed method randomized controlled trial. Setting: Acute and community care in three Canadian cities. Subjects: Caregivers were family members or friends providing care to individuals who experienced their first stroke. Intervention: The TIRSFSP offered in two formats, self-directed by the caregiver or stroke support person-directed over time, were compared to standard care. Main measures: Caregivers completed baseline and follow-up measures 1, 3 and 6 months post-stroke including Centre for Epidemiological Studies Depression, Positive Affect, Social Support, and Mastery Scales. We completed in-depth qualitative interviews with caregivers and maintained intervention records describing support provided to each caregiver. Results: Thirty-one caregivers received standard care (n=10), self-directed (n=10), or stroke support person-directed (n=11) interventions. We retained 77% of the sample through 6-months. Key areas of support derived from intervention records (n=11) related to caregiver wellbeing, caregiving strategies, patient wellbeing, community re-integration, and service delivery. Compared to standard care, caregivers receiving the stroke support person-directed intervention reported improvements in perceived support (estimate 3.1, P=.04) and mastery (estimate .35, P=.06). Qualitative caregiver interviews (n=19) reflected the complex interaction between caregiver needs, preferences and available options when reporting on level of satisfaction. Conclusions: Preliminary findings suggest the research design is feasible, caregivers’ needs are complex, and the support intervention may enhance caregivers’ perceived support and mastery. The intervention will be tested further in a large scale trial. [ABSTRACT FROM AUTHOR]