Caregivers' Contributions to Heart Failure Self-care: An Updated Systematic Review.

BACKGROUND: A previous systematic review reporting the contributions of informal, unpaid caregivers to patient heart failure (HF) self-care requires updating to better inform research, practice, and policy. OBJECTIVE: The aim of this study was to provide an updated review answering the questions: (1) What specific activities do informal caregivers of adults with HF take part in related to HF self-care? (2) Have the activities that informal caregivers of adults with HF take part in related to HF self-care changed over time? (3) What are the gaps in the science? METHODS: This review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, EMBASE, and Cochrane CENTRAL databases were searched. Eligible studies involved an informal, unpaid caregiver of an adult with HF as a study variable or participant. Caregiving activities were benchmarked using the theory of self-care in chronic illness. RESULTS: Two thousand one hundred fifty-four research reports were identified, of which 64 met criteria. Caregivers' contributions occurred in self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than activities performed for the patient. Change over time involved the 3 domains differentially. Gaps include ambiguous self-care activity descriptions, inadequate caregiving time quantification, and underrepresented self-care monitoring, supportive, and communication activities. CONCLUSIONS: Newly identified caregiver-reported activities support updating the theory of self-care in chronic illness to include activities currently considered ancillary to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine task difficulty and burden, and identify caregiver self-care strategy and education needs. Exposing the hidden work of caregiving is essential to inform policy and practice.

Older Adults' Process of Collaborating With a Support Team During Transitions From Hospital to Home: A Grounded Theory Study.

BACKGROUND AND OBJECTIVES: Little is known about how older adults engage with multiple sources of support and resources during transitions from hospital to home, a period of high vulnerability. This study aims to describe how older adults identify and collaborate with a support team, including unpaid/family caregivers, health care providers, and professional and social networks, during the transition. RESEARCH DESIGN AND METHODS: This study utilized grounded theory methodology. One-on-one interviews were conducted with adults aged 60 and older following their discharge from a medical/surgical inpatient unit in a large midwestern teaching hospital. Data were analyzed using open, axial, and selective coding. RESULTS: Participants (N = 25) ranged from 60 to 82 years of age, 11 were female, and all participants were White, non-Hispanic. They described a process of identifying a support team and collaborating with that team to manage at home and progress their health, mobility, and engagement. Support teams varied, but included collaborations between the older person, unpaid/family caregiver(s), and their health care providers. Their collaboration was impacted by the participant's professional and social networks. DISCUSSION AND IMPLICATIONS: Older adults collaborate with multiple sources of support and this collaboration is a dynamic process that varies across phases of their transition from hospital to home. Findings reveal opportunities for assessing individual's support and social networks, in addition to health and functional status, to determine needs and leverage resources during transitions in care.

A scoping review of unpaid caregivers' experiences during older adults' hospital-to-home transitions.

The objective of this scoping review is to examine current evidence regarding unpaid/family caregivers' experiences during older adults' hospital-to-home transitions to identify gaps and opportunities to involve caregivers in transitional care improvement efforts. Eligible articles focused on caregiver experience, outcomes, or interventions during older adults' hospital-to-home transitions. Our review identified several descriptive studies focused on exploring the caregiver experience of older adult hospital-to-home transitions and caregiver outcomes (such as preparedness, strain, burden, health, and well-being). Qualitative studies revealed challenges at multiple levels, including individual, interpersonal, and systemic. Few interventions have targeted or included caregivers to improve discharge education and address support needs during the transition. Future work should target underrepresented and marginalized groups of caregivers, and caregivers' collaboration with community-based services, social networks, or professional services. Work remains in developing and implementing interventions to support both older adult and caregiver needs.

Rural age-friendly ecosystems for older adults: An international scoping review with recommendations to support age-friendly communities.

Background and Aims: The population of older adults in rural areas is rising, and they experience higher rates of poverty and chronic illness, have poorer health behaviors, and experience different challenges than those in urban areas. This scoping review seeks to (1) map the state of the science of age-friendly systems in rural areas regarding structural characteristics, processes for delivering age-friendly practices, and outcomes of age-friendly systems, (2) analyze strengths, weakness, opportunities, and threats of age-friendly system implementation, and (3) make person, practice, and policy-level recommendations to support active aging and development of age-friendly communities. Methods: An international scoping review was conducted of articles that used age-friendly framing, had a sample age of 45 years of age or older, self-identified as rural, and reported empiric data. Searches were conducted in PubMed, CINAHL, AgeLine, PsychINFO, EMBASE, Scopus, and Academic Search Elite on October 26, 2021, and rerun March 10, 2023. Data were charted across three analytic layers: socioecological model, Donabedian's framework, and SWOT analysis. Results: Results reveal limited data on outcomes relevant to organizations, such as return on investment or healthcare utilization. While the SWOT analysis revealed many strengths of age-friendly systems, including their impact on persons' outcomes, it also revealed several weaknesses, threats, and gaps. Namely, age-friendly systems have weaknesses due to reliance on trained volunteers and staff, communication, and teamwork. System-level threats include community and health system barriers, and challenges in poor/developing areas. Conclusions: While age-friendly systems in this review were heterogeneous, there is an opportunity to focus on unifying elements including the World Health Organization age-friendly cities framework or 4Ms framework for age-friendly care. Despite the many benefits of age-friendly systems, we must acknowledge limitations of the evidence base, pursue opportunities to examine organizational metrics to support implementation and sustainability of age-friendly systems, and leverage improvements in age-friendliness at a community level.

A qualitative study of unpaid caregivers of persons living with dementia and their interactions with health and community-based services and providers.

BACKGROUND AND OBJECTIVES: Unpaid caregivers frequently feel underprepared and without adequate training, support, or access to services and resources to care for persons living with dementia. Health and community-based services and providers are critical to support persons living with dementia and their unpaid caregivers. The objective of this research is to understand how unpaid caregivers of persons living with dementia interact with health and community-based services and providers. RESEARCH DESIGN AND METHODS: We used a qualitative descriptive approach to analyze data from one-on-one semi-structured interviews with unpaid caregivers of persons living with dementia (N = 25). We used framework analysis to organize themes and sub-themes within the systems approach to healthcare delivery. FINDINGS: Participants described a need for additional guidance, information, and support from health and community-based services and providers. This need was described by participants at 4 levels: individual, care team, organization, and political and economic environment. Participants were active in proposing potential solutions to challenges at all 4 levels, including improving provider awareness and training in dementia, opportunities to provide resources and referrals upon dementia diagnosis, a central clearinghouse for information and resources for persons living with dementia and caregivers, and opportunities to close service gaps. DISCUSSION AND IMPLICATIONS: Findings of this study highlight the need for increased involvement of caregivers of persons living with dementia as community stakeholders for improving care and services. Recommendations to promote high quality care and better support unpaid caregivers by developing interventions to address multiple aspects of healthcare delivery are consistent with recent legislation and are important areas of future research.