A standardized process in the electronic health record to identify and recruit family and other unpaid caregivers of Veterans for a caregiver survey study (Preprint)

BACKGROUND Most efforts to identify caregivers for research use passive approaches like self-nomination. We describe an approach where the EHR can help identify, recruit, and increase diverse representation of caregivers. OBJECTIVE Few health systems have implemented systematic processes to identify caregivers. We aimed to evaluate an electronic health record (EHR) algorithm for identifying Veterans with caregivers. METHODS We identified initial cohorts of Veterans likely to need supportive care from friends or family based with pre-defined EHR referrals for home and community care. Veterans were contacted assess whether the Veteran had an unpaid caregivers; unpaid caregivers were then contacted and offered enrollment in a caregiver survey. We compared Veteran characteristics from the EHR across these referral, screening, and recruitment groups using descriptive statistics and logistic regression models. RESULTS Of 12,212 Veterans identified through EHR referrals, 2,134 (17.4%) were selected for screening and 1,367 (11.2%) answered phone screening; 813 (60%) of those screened had a caregiver, and 435 (53%) caregivers participated in a survey. Married veterans had increased odds of having a caregiver (adjusted OR 2.63 [95%CI 1.65-4.24]) or had an adult day health care referral (adjusted OR 3.06 [95%CI 1.38 – 7.76]) or a respite care referral (adjusted OR 2.21 [95%CI 1.45-3.44].) Caregivers of Veterans with dementia had increased odds of participating in the survey (adjusted OR 1.78 [95%CI 1.20-2.65]). CONCLUSIONS The EHR algorithm process is systematic, resource intensive, and imperfect. Sixty percent of successfully screened Veterans had an unpaid caregiver. Implementing discrete caregiver fields in the EHR would support more efficient systematic identification of caregivers. CLINICALTRIAL ClincalTrials.gov Identifier: NCT03474380.

“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

Background Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.

Longitudinal changes in the use of PD Assistance for patients maintained on Peritoneal Dialysis

Background: Home dialysis therapies such as peritoneal dialysis (PD) offer flexibility and improved wellbeing, particularly for older individuals. However, a substantial proportion require assistance with personal care and healthcare related tasks. We hypothesized that patients and families would require less PD assistance as they became more familiar with PD-related tasks. The study objective was to assess whether the nature of, and need for, PD assistance decreased over time. Methods: Using a multicentred, prospective observational study design, patients aged ≥50 years were recruited from those starting PD. Patients underwent formal evaluation using validated components of a Comprehensive Geriatric Assessment at baseline, and were followed monthly and administered a questionnaire about the need for assistance with PD-related tasks. Results: A total of 111 patients (age 69 ± 10 years, 68% male, 56% diabetic) were followed for a total of 609 patient-months. Of those who needed help, 40% had help from a family member and 33% were helped by nurses. Both the quantity and nature of help received by patients remained generally stable throughout follow-up, and did not vary according to age, frailty, functional dependence or cognitive impairment (p=0.93). The proportion of patients needing help varied widely across the 13 different tasks, but appeared relatively stable across time. The paid/unpaid caregiver ratio for the different tasks did not change over time. Conclusions: Older patients initiating PD, in the outpatient setting, have a high need for assistance with PD-related tasks which appears to persist over the initial 6-month period.

“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

Background Stepping into the role of an unpaid caregiver to offer help for a family member or friend is often considered a natural expectation of partners or family members. In Canada, the contributions of caregivers are substantial in healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions We provide some examples of system-level policy and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations. We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team.

Cuidadores familiares, no profesionales o informales: Revisión de la terminología en publicaciones científicas

Introduction: The figure of the caregiver of dependent persons is today the subject of scientific research in various disciplines in the health and social sciences. However, the terminology used to refer to the caregiver is often confusing, especially when they are not health professionals. Purpose: To analyze the terminology used to refer to the figure of the unpaid caregiver without technical training in scientific publications in recent years. Methods: A two-stage analysis was conducted: (1) review of publications in national and international databases in 1996-2005 and 2006-2016, and (2) review 2006-2016 using specific Dialnet database filters. Results: Despite the more frequent use of "family caregivers" (in Spanish and English) in the publication titles, differences were observed in the use of other terms depending on the year of publication, the subject matter, type of journal or quality of the publication. Conclusion: The lack of agreement on the use of an established terminology to refer to the caregiver profile shows the need for constant revision and updating of the terms.