Care partners and consumer health information technology: A framework to guide systems-level initiatives in support of digital health equity.

Introduction: Consumer-oriented health information technologies (CHIT) such as the patient portal have a growing role in care delivery redesign initiatives such as the Learning Health System. Care partners commonly navigate CHIT demands alongside persons with complex health and social needs, but their role is not well specified. Methods: We assemble evidence and concepts from the literature describing interpersonal communication, relational coordination theory, and systems-thinking to develop an integrative framework describing the care partner's role in applied CHIT innovations. Our framework describes pathways through which systematic engagement of the care partner affects longitudinal work processes and multi-level outcomes relevant to Learning Health Systems. Results: Our framework is grounded in relational coordination, an emerging theory for understanding the dynamics of coordinating work that emphasizes role-based relationships and communication, and the Systems Engineering Initiative for Patient Safety (SEIPS) model. Cross-cutting work systems geared toward explicit and purposeful support of the care partner role through CHIT may advance work processes by promoting frequent, timely, accurate, problem-solving communication, reinforced by shared goals, shared knowledge, and mutual respect between patients, care partners, and care team. We further contend that systematic engagement of the care partner in longitudinal work processes exerts beneficial effects on care delivery experiences and efficiencies at both individual and organizational levels. We discuss the utility of our framework through the lens of an illustrative case study involving patient portal-mediated pre-visit agenda setting. Conclusions: Our framework can be used to guide applied embedded CHIT interventions that support the care partner role and bring value to Learning Health Systems through advancing digital health equity, improving user experiences, and driving efficiencies through improved coordination within complex work systems.

Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care.

Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-identify. Semi-structured interviews were conducted with care partners (N = 15) who completed the adapted OurNotes to explore their perceptions of the tool (usability, benefits, and challenges) and recommendations for refinement. The data were analyzed using thematic analysis. Benefits included enhancing care partners' preparedness for the visit and opening a direct channel to express concerns about patients' cognition and memory loss to clinicians. Challenges pertained to clinician responsiveness; recommendations focused on enabling the submitted OurNotes responses to be edited and updated by multiple care partners. Such refinements may help to maximize the impact of adapted OurNotes' and potential for future implementation and dissemination.

Mental Health and Well-Being Among Home Health Aides.

Importance: Home health aides and attendants (HHAs) provide essential care to older adults and those with chronic conditions in the home. However, some HHAs struggle with poor mood and stress, which may have been exacerbated by the COVID-19 pandemic. Objective: To elicit HHAs' perspectives toward mental health and well-being, including how their job influences both and how to better support the workforce in the future. Design, Setting, and Participants: For this qualitative study, focus groups and interviews with HHAs were facilitated in English and Spanish from August 17, 2022, to February 9, 2023, in partnership with the 1199SEIU Training and Employment Fund, a benefit fund of the 1199SEIU United Healthcare Workers East and the largest health care union in the US. Included were HHAs at risk for poor mental health and well-being, which were defined as having at least mild or more symptoms on either the 8-item Personal Health Questionnaire depression scale, the 4-item Cohen Perceived Stress Scale, or the University of California, Los Angeles Loneliness Scale. Exposure: Mental health and well-being of HHAs. Main Outcomes and Measures: Focus groups and interviews were audio recorded, professionally transcribed, and translated. A thematic analysis was performed that was informed by Pender's Health Promotion Model and the National Institute for Occupational Safety and Health's Total Worker Health model. Results: A total of 28 HHAs from 14 different agencies participated (mean [SD] age, 54.3 [10.8] years; 26 female [93%]). Seventeen participants (61%) spoke Spanish at home. Five key themes emerged: (1) HHAs' attitudes toward mental health and well-being were influenced by a variety of personal and cultural factors; (2) HHAs' relationships with their patients impacted their mood in both positive and negative ways; (3) structural and organizational aspects of the job, alongside the COVID-19 pandemic, impacted HHAs' mood and stress levels; (4) HHAs used a variety of strategies to cope with their emotions; and (5) HHAs were eager for interventions that can improve their mood, particularly those that bring them closer to their colleagues. Conclusions and Relevance: These findings suggest that HHAs' mental health and well-being may be influenced by both personal and occupational factors. Interventions and policies to better support their emotional well-being on the job are warranted.

Program of All-Inclusive Care for the Elderly: an untapped setting for research to advance pain care in older persons.

The Program of All-Inclusive Care for the Elderly (PACE) is a community-based care model in the United States that provides comprehensive health and social services to frail, nursing home-eligible adults aged 55 years and older. PACE organizations aim to support adequate pain control in their participants, yet few evidence-based pain interventions have been adopted or integrated into this setting. This article provides a roadmap for researchers who are interested in collaborating with PACE organizations to embed and evaluate evidence-based pain tools and interventions. We situate our discussion within the Consolidated Framework for Implementation Research (CFIR), a meta-theoretical framework that considers multi-level influences to implementation and evaluation of evidence-based programs. Within each CFIR domain, we identify key factors informed by our own work that merit consideration by research teams and PACE collaborators. Inner setting components pertain to the organizational culture of each PACE organization, the type and quality of electronic health record data, and availability of staff to assist with data abstraction. Outer setting components include external policies and regulations by the National PACE Association and audits conducted by the Centers for Medicare and Medicaid Services, which have implications for research participant recruitment and enrollment. Individual-level characteristics of PACE organization leaders include their receptivity toward new innovations and perceived ability to implement them. Forming and sustaining research-PACE partnerships to deliver evidence-based pain interventions pain will require attention to multi-level factors that may influence future uptake and provides a way to improve the health and well-being of patients served by these programs.

Mental Health Integration and Delivery in the Hospice and Palliative Medicine Setting: A National Survey of Clinicians.

CONTEXT: Mental health comorbidities among individuals with serious illness are prevalent and negatively impact outcomes. Mental healthcare is a core domain of palliative care, but little is known about the experiences of palliative care clinicians delivering such care. OBJECTIVES: This national survey aimed to characterize the frequency with which palliative care providers encounter and manage common psychiatric comorbidities, evaluate the degree of mental health integration in their practice settings, and prioritize strategies to meet the mental health needs of palliative care patients. METHODS: A e-survey distributed to the American Academy of Hospice and Palliative Medicine membership. RESULTS: Seven hundred eight palliative care clinicians (predominantly physicians) were included in the analysis. Mood, anxiety, and neurocognitive disorders were frequently encountered comorbidities that many respondents felt comfortable managing. Respondents felt less comfortable with other psychiatric comorbidities. Eighty percent of respondents noted that patients' mental health status impacted their comfort delivering general palliative care at least some of the time. Mental health screening tool use varied and access to specialist referral or to integrated psychiatrists/psychologists was low. Respondents were unsatisfied with mental health training opportunities. CONCLUSION: Palliative care clinicians play a crucial role in addressing mental health comorbidities, but gaps exist in care. Integrated mental health care models, streamlined referral systems, and increased training opportunities can improve mental healthcare for patients with serious illness.

Establishing the Feasibility and Acceptability of a Caregiver Targeted Intervention to Improve Pain Assessment Among Persons With Dementia.

Background and Objectives: Despite its prevalence and impact, pain is underdetected and undermanaged in persons with dementia. Family caregivers are well positioned to detect pain and facilitate its management in their care recipients, but they lack training in symptom recognition and communication. This study reports findings from a pilot trial evaluating the Pain Identification and Communication Toolkit (PICT), a multicomponent intervention that provides training in observational pain assessment and coaching in pain communication techniques. Research Design and Methods: Family caregivers of persons with comorbid pain and moderate-to-advanced dementia were randomly assigned to PICT (n = 19) or a control condition (n = 15). Caregivers in the PICT group participated in four weekly sessions delivered by telephone with a trained interventionist; caregivers in the control group received an information pamphlet about pain and dementia. All participants completed surveys at baseline and 12 weeks. Caregivers in the intervention group also completed semistructured interviews at 12 weeks. Quantitative data were analyzed using descriptive statistics and t tests; qualitative data were analyzed using content analysis. Results: All participants (100%) in the PICT group completed the intervention and most completed the 12-week assessment (94%). PICT randomized caregivers reported that the intervention helped them to feel more confident in their ability to recognize (67%) and communicate about pain symptoms (83%). At 12 weeks, caregivers in the PICT group showed a statistically significant improvement in self-efficacy in pain-related communication. In qualitative interviews, caregivers emphasized the utility of PICT's components, including pain assessment tools, and offered considerations for future enhancements, such as technology-based adaptations and integration within care delivery systems. Discussion and Implications: This pilot trial demonstrates that PICT is feasible to implement, acceptable to caregivers, and has the potential to improve confidence in recognizing and communicating about pain. Results support conducting a fully powered efficacy trial, an important step toward future integration into real-world care delivery. Clinical Trial Registration Number: NCT03853291.

Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial.

Family caregivers play an essential role in supporting the health and well-being of older adults with dementia, a population projected to increase rapidly over the coming decades. Enrolling caregivers of people with dementia (PWD) in research studies is vital to generating the evidence necessary to support broader implementation of efficacious intervention programs in real-world care delivery, but a range of challenges impede recruitment and enrollment of sufficiently large and representative sample sizes. In this article, we characterize the challenges and lessons learned from recruiting caregivers of PWD to participate in a pilot randomized control trial. We utilize Bronfenbrenner's ecological model to categorize the challenges into three levels: individual (i.e., understanding caregivers' time constraints and motivations), community (i.e., reaching underrepresented populations and accessing caregiver support groups) and institutional (i.e., obtaining informed consent and navigating research registries). We found that establishing rapport and maintaining flexibility with participants was crucial for motivating individuals to enroll in our study. Building trust with local communities by collaborating with support group leaders, appointing a co-investigator who is already embedded within a given community, and establishing equitable partnerships with organizations increased recruitment rates. At the institutional level, engaging experts in regulatory affairs and geriatrics may help overcome barriers in obtaining approval from institutional review boards. We also recommend using research registries of individuals who offer their contact information to researchers. The lessons learned from our research-including the challenges and potential solutions to overcome them-may promote more effective and efficient recruitment in future research.

Catalyzing dementia care through the learning health system and consumer health information technology.

To advance care for persons with Alzheimer's disease and related dementias (ADRD), real-world health system effectiveness research must actively engage those affected to understand what works, for whom, in what setting, and for how long-an agenda central to learning health system (LHS) principles. This perspective discusses how emerging payment models, quality improvement initiatives, and population health strategies present opportunities to embed best practice principles of ADRD care within the LHS. We discuss how stakeholder engagement in an ADRD LHS when embedding, adapting, and refining prototypes can ensure that products are viable when implemented. Finally, we highlight the promise of consumer-oriented health information technologies in supporting persons living with ADRD and their care partners and delivering embedded ADRD interventions at scale. We aim to stimulate progress toward sustainable infrastructure paired with person- and family-facing innovations that catalyze broader transformation of ADRD care.

What Motivates Physicians to Address Caregiver Needs? The Role of Experiential Similarity.

Despite the significant stress of family caregiving, caregivers' needs and risks are often overlooked in healthcare settings. This study examined the factors associated with primary care physicians' perceived responsibility to identify and address caregiver needs and risks. Using a national random sample of U.S. primary care physicians (N = 106), multivariable logistic regression analyses were conducted to examine associations of physicians' perceived responsibility to assess caregivers' needs with experiential similarity (personal experience with caregiving), structural similarity (being older and female), and secondary exposure variables (time seeing older adults in the outpatient setting). Most (76.5%) physicians felt responsible for identifying caregivers' needs and risks. In multivariable models, physicians who had personal experience with caregiving were four times more likely than those without it to feel responsible for identifying caregivers' needs and risks and assessing caregivers' mental health concerns. Thus, physicians may benefit from educational interventions that immerse them in caregivers' lived experiences.

Family Caregivers' Challenges in Cancer Pain Management for Patients Receiving Palliative Care.

CONTEXT: Family caregivers (FCs) of cancer patients play a crucial role in managing their care partner's pain, but little research has examined FCs' specific challenges regarding the provision of pain management (PM) to cancer patients receiving palliative care. OBJECTIVES: To determine the demographic and clinical characteristics of FCs who encounter challenges in PM and to elucidate the specific challenges that FCs face when managing pain for their care partner with cancer. METHODS: We conducted a secondary analysis of 40 interview transcripts of FCs who were caring for persons with cancer. Interviews were audio-recorded, transcribed verbatim, and analyzed using deductive thematic analysis. RESULTS: The three major identified challenges to PM for FCs of persons with cancer were: (1) communication and teamwork issues, (2) caregiver-related issues, and (3) patient-related issues. Communication and teamwork issues encompassed caregivers' receipt of inadequate information regarding PM, and inappropriate and ineffective communication from the healthcare team. Caregiver issues pertained to caregivers' fear and beliefs, concurrent responsibilities, and lack of pain-related knowledge and skills. Patient issues related to their own fear and beliefs, psychological and physiological well-being, adherence to medications, and reluctance to report pain. CONCLUSION: Findings of this study have implications for future research and practice related to cancer PM in palliative care. Results suggest the need for FC training in PM as well as clear clinical practice guidelines and resources to help providers prepare, educate, and communicate with FCs regarding PM.

Warning Signs of Acute Infectious Disease-Related Illness in Persons Living With Dementia: Perspectives of Primary Care Providers, Adult Day Service Center Staff, and Family Care Partners.

In the current study, we conducted one-on-one interviews with primary care providers (PCPs) and family care partners (FCPs) and held focus groups with interdisciplinary adult day service center (ADSC) staff to understand the perspectives of care providers across community settings regarding early warning signs of acute illnesses in persons living with dementia (PLWD). We used content analysis to analyze qualitative data. Warning signs of acute illnesses in PLWD fell into one of five categories, including new onset changes in (a) physical functions, (b) moods or behaviors (psychological), (c) social interactions, (d) speech, or (e) appearance. FCPs (n = 11) focused on physical changes, whereas ADSC staff (n = 33) emphasized changes in speech and social interactions in addition to the other categories. Although ADSC staff and PCPs (n = 22) focused on changes in functions and moods, each group described these changes differently. ADSC staff possess rich information that can be used to identify acute changes in PLWD and describe a broader range of warning signs compared to PCPs and FCPs. FCPs may benefit from further training in distinguishing between normal disease progression and acute illness. Future research should focus on the implementation of standardized tools across community-based care providers to simplify the identification and reporting of early warning signs in PLWD. [Journal of Psychosocial Nursing and Mental Health Services, 61(5), 35-43.].

Addressing the Home Care Shortage: Predictors of Willingness to Provide Paid Home Care in New York.

OBJECTIVES: To determine the prevalence and predictors of willingness to consider becoming a paid home care worker. DESIGN: Cross-sectional telephone-based survey study. SETTING AND PARTICIPANTS: 800 adult residents of New York State participating in the 2020 Empire State Poll, an annual survey conducted in English and Spanish using random-digit dialing. METHODS: Willingness to consider working as a paid home care worker was analyzed as the main outcome. Survey questions also involved demographics and unpaid caregiving experience. We used multinomial logistic regression to examine associations between participant characteristics and willingness to be a paid caregiver. RESULTS: Participants had a mean age of 47.7 years (95% CI 45.4-50.0). Demographic information included 51.1% female gender, 65.4% White race, 13.4% Black race, 6.4% Asian or Pacific Islander, 14.8% another race, 19.1% Hispanic/Latino ethnicity, and 43.0% household income below $50,000 per year. A weighted 25.4% of participants would consider becoming a paid home care worker. In an adjusted model, willingness to be a paid home care worker was associated with younger age [odds ratio (OR) 0.98, 95% CI 0.96-1.00, P = .032], female gender (OR 2.46, 95% CI 1.35-4.46, P = .003), Black or other race (OR 2.40, 95% CI 1.11-5.17, P = .026, and OR 3.13, 95% CI 1.30-7.54, P = .011, respectively), Hispanic ethnicity (OR 2.26, 95% CI 1.06-4.81, P = .035), household income below $50,000 per year (OR 2.00, 95% CI 1.03-3.88, P = .040), and having provided unpaid family caregiving (OR 2.08, 95% CI 1.15-3.76, P = .016). CONCLUSIONS AND IMPLICATIONS: A quarter of New Yorkers would consider working as a paid home care worker. Willingness to consider this occupation was associated with the demographic characteristics disproportionately represented in the current home care workforce. Improved working conditions and compensation could help attract and retain home care workers, thereby addressing the rising need for home care in the United States.

Utilization, Contributions, and Perceptions of Paid Home Care Workers Among Households in New York State.

BACKGROUND AND OBJECTIVES: While family caregivers have traditionally provided care for older adults with chronic conditions and disabilities, the demand for paid home care workers has increased in the last decade. Although typically thought to assist with personal care, emerging data suggest that paid home care workers assist with a wider scope of care. However, the extent and quality of the care they deliver remains poorly understood. RESEARCH DESIGN AND METHODS: Using the Empire State Poll, a telephone-based cross-sectional survey of 800 adults in New York State, we characterized the types of care that paid home care workers provided and the perceived value of that care. RESULTS: Of 800 participants surveyed, 274 reported that they or an immediate family member received care from a paid home care worker (34.3%). Of these, the majority (73.9%) reported that paid home care workers provided emotional and/or medical care, in addition to personal care. In adjusted models, providing emotional and medical care (compared to personal care alone) was associated with nearly a twofold greater perception of importance and experience by the care recipients. DISCUSSION AND IMPLICATIONS: Our findings provide additional data on how paid home care workers contribute to patient care, from the perspective of the care recipient(s). The type of care provided is associated with varying magnitudes of perceived quality. Although limited to New York, these findings have implications for paid home care workers' training and compensation. Future studies are warranted to investigate the specific factors that mediate the association between types of care provided and their perceived value.

Provider perspectives on integrating family caregivers into patient care encounters.

OBJECTIVE: To examine and compare health care provider perceptions for integrating family caregivers into patient encounters and other processes of care by medical specialty. DATA SOURCES/SETTING: Data were from 19 interviews conducted in 2018, 10 with primary care or palliative care providers and nine with proceduralists or interventionists in practices located in Minnesota, Florida, and Arizona. STUDY DESIGN: This was a qualitative study using data collected from one-on-one, semi-structured interviews with physicians. DATA COLLECTION: By using purposeful "maximum variation" sampling to capture differences between primary and palliative care providers and proceduralists/interventionists, data were collected, reviewed, coded, and then analyzed using inductive content analysis with a constant comparison approach. PRIMARY FINDINGS: Primary care providers described a lack of organizational and institutional resources to support caregivers. Accordingly, they were compelled to curb caregiver engagement in order to meet patients' clinical care needs within the time and workflow demands in encounters. Proceduralists and interventionists described the need to assess caregivers for suitability to provide care during intense periods of treatment. They reported having access to more formal organizational resources for supporting caregivers. Overall, providers described a paradox, where caregivers are seen as contributing value to patient encounters until they need training, education, or support to provide care, at which point they become burdensome and require more time and resources than are typically available. CONCLUSIONS: Results highlight how organizational constraints inhibit caregiver engagement in patient encounters and influence provider attitudes about engaging caregivers and assessing their unmet needs. Findings also provide insights into challenges across practice types for implementing state and federal laws that promote caregiver engagement.

Caregiver-provider communication about pain in persons with dementia.

BACKGROUND: Pain in older persons with dementia is both under-detected and under-managed. Family caregivers can play an important role in addressing these deficiencies by communicating their care recipient's symptoms and behaviors to medical providers, but little is known about how caregivers and providers approach pain-related discussions in the context of dementia. The goal of this study was to explore how ambulatory care providers and family caregivers of persons with dementia view pain communication. METHODS: In-depth, semi-structured interviews were conducted with family caregivers (n = 18) and healthcare providers involved in dementia care (n = 16). Interviews focused on three specific content areas: (1) caregivers' roles in communicating about pain in persons with dementia, (2) challenges experienced when communicating about pain in persons with dementia, and (3) strategies and recommendations for optimizing communication in this context. All interviews were audio-recorded, transcribed, and analyzed using the constant comparative method of data analysis. RESULTS: Caregivers and providers described various roles that caregivers assumed in communication processes, such as serving as historians, interpreters, and advocates. They identified two key features of problematic communication-receipt of inadequate information and interpersonal conflict about the care recipient's pain-and articulated how ambiguity around pain and dementia, as well as preexisting beliefs and emotions, contributed to communication challenges. They also offered several suggestions to improve caregiver-provider communication processes, including the use of (1) written records to enhance the accuracy of caregivers' reports and ensure that providers had specific information to inform symptom management and treatment plans, (2) pain scales and follow-up discussions to establish baseline data and clarify treatment recommendations, and (3) collaboration and rapport-building strategies to validate the caregivers' contributions and maximize a team-based decision-making. CONCLUSION: Receipt of inadequate information and interpersonal conflict are key challenges to caregiver-provider communication regarding pain in persons with dementia. Written records, pain scales, and rapport-building strategies may help to address these challenges.

Receipt of Posthospitalization Care Training Among Medicare Beneficiaries' Family Caregivers.

Importance: Medicare conditions of participation require hospitals to provide training to family and unpaid caregivers when their support is necessary to enact the postdischarge care plan. However, caregivers often report feeling unprepared for this role. Objective: To describe the characteristics of caregivers who assist with posthospitalization care transitions and assess the prevalence of and factors associated with receipt of adequate transitional care training. Design, Setting, and Participants: This cross-sectional study analyzed data from the 2017 National Health and Aging Trends Study and its linked National Study of Caregiving, surveys of Medicare beneficiaries and their family and unpaid caregivers. The present study included family caregivers for community-living Medicare beneficiaries 65 years or older with disabilities. Data analysis was performed from June to September 2020. Main Outcomes and Measures: Characteristics of family caregivers by whether they assisted during a posthospitalization care transition in the year preceding the survey interview. Unweighted frequencies and weighted percentages, as well as the results of weighted Pearson and Wald tests for differences between groups, are reported. Receipt of the training needed to manage the older adult's posthospitalization care transition (hereafter referred to as adequate transitional care training) as a function of individual caregiver characteristics was modeled using multivariable, weighted logistic regression. Results: Of 1905 family caregivers, 618 (58.9%) were 60 years or older, 1288 (63.8%) were female, and 796 (41.7%) assisted with a posthospitalization care transition. Those who assisted with a posthospitalization care transition were more likely to report experiencing financial (154 [18.3%] vs 123 [10.1%]; P < .001), emotional (344 [41.3%] vs 342 [31.1%]; P < .001), and physical (200 [22.2%] vs 170 [14.6%]; P = .001) difficulty associated with caregiving. Among caregivers who assisted during a posthospitalization care transition, 490 (59.1%) reported receiving adequate transitional care training. Caregivers were less likely to report receiving adequate training if they assisted an older adult who was female (316 [62.3%] vs 227 [73.2%]; P = .02), Black (163 [14.0%] vs 121 [19.8%]; P = .02), or enrolled in Medicaid (127 [21.2%] vs 90 [31.9%]; P = .01). After adjusting for older adult characteristics, caregivers were half as likely to report receiving adequate training if they were Black (adjusted odds ratio [aOR], 0.52; 95% CI, 0.31-0.89) or experienced financial difficulty (aOR, 0.50; 95% CI, 0.31-0.81). Caregivers were more than twice as likely to report receiving adequate training if they were female (aOR, 2.44; 95% CI, 1.65-3.61) or spoke with the older adult's clinician about his or her care in the past year sometimes or often vs never (aOR, 1.93; 95% CI, 1.19-3.12). Conclusions and Relevance: In this cross-sectional study, caregivers were less likely to receive adequate transitional care training if they were Black; experienced financial difficulty; or cared for a Black, female, or Medicaid-enrolled older adult. These findings suggest that changes to the discharge process, such as using standardized caregiver assessments, may be necessary to ensure equitable support of family caregivers.

Association Between Caregiver Strain and Self-Care Among Caregivers With Diabetes.

Importance: Caregiver strain has been shown to be associated with adverse effects on caregivers' health, particularly among those with cardiovascular disease. Less is known about the association of caregiver strain with health behaviors among caregivers with diabetes, a disease that requires a high degree of self-care. Objective: To examine the association between caregiver strain and diabetes self-care among caregivers with diabetes. Design, Setting, and Participants: This cohort study was conducted between July 13, 2018, and June 25, 2020, using data on 795 US caregivers aged 45 years or older with self-reported diabetes from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, which comprised 30 239 Black and White adults 45 years or older throughout the US enrolled from January 2003 to October 2007. Exposures: Caregiver strain, assessed by self-report in response to the question, "How much of a mental or emotional strain is it to provide this care?" Response options were no strain, some strain, or a lot of (high) strain. Main Outcomes and Measures: Diabetes self-care, which was assessed across 4 domains (Mediterranean diet adherence, physical activity, smoking status, and medication adherence), and a composite self-care score summing performance across these domains. The association between caregiver strain and diabetes self-care was examined with multivariable Poisson regression adjusting for demographic, clinical, physical and mental functioning, and caregiving covariates. Results: Among the 795 caregivers with diabetes included in the study, the mean (SD) age was 63.7 (8.6) years, 469 (59.0%) were women, and 452 (56.9%) were Black individuals. Overall, 146 caregivers (18.4%) reported high caregiver strain. In unadjusted models, high caregiver strain was associated with less physical activity (prevalence ratio [PR], 0.66; 95% CI, 0.45-0.97), low medication adherence (PR, 0.80; 95% CI, 0.68-0.94), and worse self-care (PR, 0.65; 95% CI, 0.44-0.98). In adjusted models, the association between some and high caregiving strain with low medication adherence remained significant (adjusted PR: some strain, 0.88 [95% CI, 0.78-0.99]; high strain, 0.83 [95% CI, 0.69-0.99]). Conclusions and Relevance: In this cohort study of US adult caregivers with diabetes, a high level of strain was associated with low medication adherence. Increased awareness of the prevalence of caregiver strain and potential ramifications on caregivers' self-care appears to be warranted among health care professionals and caregivers.

Challenges and approaches to involving family caregivers in primary care.

OBJECTIVE: Older adults are commonly accompanied to routine medical visits. This study identifies challenges and explores approaches to managing patient-family interactions in primary care. METHODS: Semi-structured interviews were conducted with primary care clinicians and staff (N = 30) as well as older adult patients and family caregivers (N = 40). Interviews were analyzed using content analysis. RESULTS: Three major challenges to patient-family interactions were identified: navigating patient autonomy and family motivation to participate; adjudicating patient-family disagreements; and minimizing obtrusive behaviors by caregivers. Three approaches to managing patient-family interactions were identified. Collaborating involved non-judgmental listening, consensus-building, and validation of different perspectives. Dividing involved separating the patient and family member to elicit confidential information from one member of the dyad. Focusing involved re-directing the conversation to either the patient or family member while minimizing input from the other. Approaches varied by patients' cognitive status and overall health condition. In general, patients and caregivers expressed the most positive attitudes toward collaborating and patient-directed focusing approaches. CONCLUSION: Primary care clinicians use varied approaches to managing their interactions with patient-family dyads. Patients and caregivers generally prefer those approaches that involve collaborative rather than individual discussions. PRACTICE IMPLICATIONS: Findings suggest the potential for the development of communication-focused interventions to promote positive clinician-patient-family interactions.

Assessing and Addressing Family Caregivers' Needs and Risks in Primary Care.

OBJECTIVES: To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care. DESIGN: Cross-sectional, national mail-based survey. SETTING: American Medical Association Masterfile database. PARTICIPANTS: U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62). MEASUREMENTS: Approaches to assessing and addressing family caregivers' needs and risks; barriers and facilitators to conducting caregiver assessments. RESULTS: Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers' needs and risks were common and encompassed a range of issues, most frequently caregivers' management of patients' safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient's living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers' needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type. CONCLUSIONS: Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers' needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice.