Fatigue is a long-term symptom for stroke survivors. This scoping review synthesized how survivors achieve fatigue adaptation.
Four databases were searched for studies between 2012 and 2021. ...Qualitative studies or qualitative findings from mixed-methods studies were included if they described survivors' experiences with fatigue and/or care partners' experiences in helping survivors adapt to fatigue. Studies were excluded if they were poster abstracts, reviews, or editorials.
Thirty-six articles were analyzed. Survivors with fatigue described different adaptive challenges - fatigue made them less productive, brought emotional distress, and was indiscernible to others. To respond to these challenges, stroke survivors did adaptive work including conserving energy, changing mindset, and restructuring normality. Care partners, employers, and colleagues showed adaptive leadership by adjusting daily routines or role responsibilities. Most survivors described that the current clinical practice did not meet their needs to address fatigue.
Stroke survivors had many types of challenges and strategies for fatigue adaptation. Survivors received family, employer, and colleague support but how care partners help survivors develop new skills is unknown. Stroke survivors expressed that healthcare professionals need to teach survivors and care partners basic knowledge of fatigue that meet their personal needs and provide adaptive interventions for survivors.
Implications for rehabilitation
The challenges of poststroke fatigue are multifaceted because fatigue influences stroke survivors' physical, cognitive, mental, and social aspects of recovery.
Stroke survivors need support from their care partners such as helping them adapt to the fatigue, adapt to new life routine, and adjust role responsibilities.
Healthcare professionals, stroke survivors, and care partners need to work together to develop strategies about poststroke fatigue that meet stroke survivors' personal needs.
•Care partners are family or friends that provide unpaid support to patients.•Dyadic research focuses on the patient and care partner as an interdependent team.•Dyadic literature in heart failure ...consists primarily of disease management studies.•Provides evidence heart failure is a shared experience affecting both dyad members.•Holds promise for improving patient, care partner, and relationship health.
Over the past decade, there has been substantial growth in heart failure (HF) research that focuses on persons with HF and their care partners (family members or other close friends that provide unpaid support) as an interdependent team, or care dyad. In this state-of-the-art review, we use a dyadic lens to identify and summarize current research on HF care dyads, from qualitative studies, to nonexperimental quantitative studies, to randomized controlled trials. Although much work has been done, this literature is younger and less well-developed than care dyad literatures from other conditions (eg, cancer, Alzheimer's disease). We discuss the substantial challenges and limitations in this body of work, with an eye toward addressing common issues that impact rigor. We also look toward future directions, and discuss the promise dyadic research holds for improving patient, care partner, and relationship health.
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Background:
Recent research on the efficacy of music-based interventions for people with dementia have focused on specific outcomes and methods, and singing has been noted as a particularly ...beneficial activity. However, due to heterogeneity of research methods, there is a need to synthesise the findings of both quantitative and qualitative research in order to better understand both the impact and potential mechanisms of singing for people in this population.
Method:
This systematic review included quantitative, qualitative and mixed-methods studies, and analysed these using a systematic mixed-studies synthesis (with a results-based convergent approach). Quantitative and qualitative data were initially synthesised using a narrative synthesis and thematic synthesis method, respectively, before a final meta-integration method was used to synthesise common themes across the two data forms.
Results:
Electronic and hand search strategies revealed 1,815 relevant studies, 40 of which met the full eligibility criteria. Narrative synthesis of quantitative data revealed six key outcome areas (quality of life; psychological well-being; cognition; engagement; activities of daily living; care-partner well-being), and thematic synthesis of qualitative data generated seven themes relating to the impact and mechanisms of singing (pragmatic elements; social benefits; mood; identity; memory; flow-on effects; and relationships). Meta-integration identified four key areas relating to the impact and mechanisms of singing for people with dementia and care-partners: psychological well-being, quality of life, cognition, and care-partner well-being.
Conclusion:
Results from the syntheses suggest that singing can positively impact the lives of people with dementia and their care-partners, although due to heterogeneity of study design and outcome measures, it is difficult to draw conclusions based on quantitative data alone. Qualitative data provides further context and insights from participant perspectives, and when integrated with quantitative data, contextual factors that may influence the benefits that participants experience from singing are revealed.
Home dialysis modalities are used in a minority of patients with kidney failure in the United States. During the 2018 National Kidney Foundation–Kidney Disease Outcomes Quality Initiative (NKF-KDOQI) ...Home Dialysis Conference, numerous ideas were suggested to help minimize barriers for the uptake and retention of home dialysis therapies. First, educational tools are needed to increase knowledge about home dialysis modalities (eg, continuous ambulatory peritoneal dialysis, continuous cycling peritoneal dialysis, and home hemodialysis). Implementation of a hub and spoke model, pairing smaller and/or newer home dialysis programs with larger more sophisticated programs that offer education and mentoring, may help dialysis programs to grow and prosper. This pairing can be facilitated by traditional conferences and newer modalities such as telemedicine and training applications. Peer support to patients, such as that offered through the NKF Peers Program, and support and respite to care partners can have beneficial effects toward both increasing the number of patients who choose home dialysis as a modality and improving retention in home dialysis programs. Anticipating and understanding both patient and care partner burden is important for the development and implementation of patient- and care partner–centered support programs that can be deployed before a patient ceases home therapy. Finally, aligning Medicare reimbursement to support appropriate increased home dialysis uptake to prioritize both transplantation and home dialysis as the first-line treatments for kidney failure.
Social robot adoption by older adults and people living with dementia is limited by several barriers, including a lack of emotional alignment with social robots and perceptions of stigma around ...social robot use. The goal of this work was to address these barriers by engaging end-users in discussions on factors that could affect emotional connection to a social robot and considerations around using a social robot in public.
We conducted seven 90-min online workshops with older adults with (
= 2) and without dementia (
= 25) and care partners (
= 17). Older adults with and without dementia were in their 50s - 80s, and care partners were in their 30s - 70s. Seven older adults, seven care partners, and one older adult with dementia indicated that they had used a robot before. Online workshops had 4-8 participants each, and began with video demonstrations of pet-like robot MiRo and tabletop robot T-Top, as well as a live demonstration of MiRo. Participants completed the Multi-Dimensional Robot Attitude Scale before the workshops and the Psychosocial Impact of Assistive Devices Scale and two Zoom polls during the workshops. The audio and chat responses from the workshops were transcribed verbatim and content analysis was performed on the transcripts.
Our analysis revealed three broad themes and 10 subthemes. In their discussions on features and applications, participants highlighted preferred forms of communication with a robot and ways in which a robot could support connection between people. For example, robots could improve the quality of communication between care partners and the person for whom they care. While many agreed that a social robot should match their level of emotion and interactivity, participants had different preferences for social robot emotional range and display features. Finally, participants discussed considerations around showing a robot to other people; several participants suggested that a robot could help raise awareness of ageing and dementia while others shared concerns about stigma and attracting negative attention from an audience.
Incorporating these findings into the design and implementation of social robots will result in devices that are better-suited to the needs of older adults, people living with dementia, and care partners.
Objective: Effective diabetes self-management can prevent long-term health complications but is often complex and difficult to achieve. Health care professionals' support for patients' autonomy ...(autonomy support) in managing their diabetes contributes to better diabetes self-care and glycemic control. Most adults with diabetes also receive self-management support from informal health supporters. Yet, the role of autonomy support from these informal health supporters has not been explored. We examined patients' perceived autonomy support from their main health supporter (family member or friend) in relation to their diabetes distress, self-efficacy, self-monitoring of blood glucose (SMBG), medication adherence, and hemoglobin A1c (HbA1c). Method: Three hundred twenty-six veterans with Type 2 diabetes at high risk for complications, who identified a main health supporter, were surveyed using self-report measures of social support, diabetes distress, self-efficacy, and self-care. HbA1c and prescription fill data were extracted from VA electronic records for the 12-months before and after the survey. Linear regression and linear mixed models examined the associations of autonomy support with diabetes distress, self-efficacy, SMBG, medication adherence, and glycemic control, controlling for participant-supporter relationship characteristics and patient-factors. Results: In adjusted models, greater autonomy support was associated with lower diabetes distress (B = −.323, SE = .098, p = .001), greater self-efficacy (B = .819, SE = .148, p < .001), more frequent SMBG (B = .297, SE = .082, p < .001), and better subsequent 12-month glycemic control (B = .257, SE = .085, p = .003) but not with medication adherence (B = .001, SE = .020, p = .994). Conclusions: Autonomy support from main health supporters is significantly associated better diabetes related attitudes, self-care, and glycemic control after adjusting for relationship and patient characteristics.
In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia ...(PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is "broken." Gaps in the health system can lead to people as one caregiver passionately expressed "falling between the cracks," in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a "person of color" contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs.
Disclosure of Alzheimer's disease (AD) risk information to cognitively unimpaired older adults may become more common if preclinical AD is shown to be identifiable and amenable to treatment. Little, ...however, is known about how families will react to this information.
Semi-structured telephonic interviews.
Seventy study partners (mean age = 68 ±11; 50% female; 70% spouses/significant others; 18% children, siblings; 12% friends) of cognitively unimpaired adults who learned a personalized AD dementia risk estimate and an amyloid-β PET scan result through their participation in preclinical AD research.
Interviewees were asked about their desire for information regarding their family member's AD dementia risk, baseline expectations of risk, understanding of amyloid-β PET scan results, and the impact of AD dementia risk information on emotions, health behaviors, and future plans, as well as on perceptions of their family member's or friend's memory.
Interviewees generally understood the AD dementia risk information (83%) and considered it valuable (75%). Risk information perceived as favorable elicited feelings of happiness and relief; unfavorable information elicited disappointment, as well as increased awareness of the participants' memory and monitoring for incipient changes in cognition. While noting that AD dementia risk information was not medically actionable at this time due to the lack of disease-modifying therapies, some interviewees described changes to their family members' and their own health behaviors and future plans.
Guidelines for the disclosure of AD dementia risk estimates and biomarker results to cognitively unimpaired adults should account for the needs and interests of individuals and their family members, who may step into a pre-caregiver role.
Rationale & Objective: Many older adults receiving hemodialysis have mobility limitations and rely on care partners, yet data are sparse regarding the support provided by care partners. Our aim was ...to examine how care partners support the mobility of an older adult receiving hemodialysis. Study Design: Qualitative study. Setting & Participants: Using purposive sampling, we recruited persons aged 60 years or more receiving maintenance hemodialysis and care partners aged 18 years or more who were providing support to an older adult receiving hemodialysis. We conducted in-person semi-structured interviews about mobility with each individual. Analytical Approach: We conducted descriptive and focused coding of interview transcripts and employed thematic analysis. Our outcome was to describe perceived mobility supports provided by care partners using qualitative themes. Results: We enrolled 31 older adults receiving hemodialysis (42% women, 68% Black) with a mean age of 73 ± 8 years and a mean dialysis duration of 4.6 ± 3.5 years. Of these, 87% of patients used assistive devices and 90% had care partners. We enrolled 12 care partners (75% women, 33% Black) with a mean age of 54 ± 16 years. From our patient and care partner interviews, we found three themes: (1) what care partners see, (2) what care partners do, and (3) what care partners feel. Regarding what they see, care partners witness a decline in patient mobility. Regarding what they do, care partners guide and facilitate activities and manage others who also assist. Regarding what they feel, care partners respect the patient’s autonomy but experience frustration and worry about the patient’s future mobility. Limitations: Modest sample size; single geographic area. Conclusions: In older adults receiving hemodialysis, care partners observe a decline in mobility and provide support for mobility. They respect the patient’s autonomy but worry about future mobility losses. Future research should incorporate care partners in interventions that address mobility in older adults receiving hemodialysis.
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