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.

Supporting the Health and Well-Being of Caregivers of Persons with Pain Strategies to address stress and improve self-care.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses. Cite this article as: Tonkikh, O., et al. Supporting the Health and Well-Being of Caregivers of Persons with Pain. Am J Nurs 2023; 123 (6): 55-61.

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.

The Relationship Between Rejection of Care Behaviors and Pain and Delirium Severity in Hospital Dementia Care.

Background and Objectives: Rejection of care is common in hospitalized persons living with dementia. However, distinguishing between rejection of care behaviors related to care practices or other causes, such as pain or delirium, is challenging. The purpose of this study is to further understand the relationship between rejection of care and pain and delirium in hospitalized patients with dementia by identifying which rejection of care behaviors are associated with pain and delirium. Research Design and Methods: Care encounters between hospitalized patients with dementia (n = 16) and nursing staff (n = 53) were observed on 88 separate occasions across 35 days. Rejection of care was measured using the 13 behaviors from the Resistiveness to Care Scale. Pain and delirium severity were measured using a variety of scales including the Pain Assessment in Advanced Dementia Scale, Checklist of Nonverbal Pain Indicators, and numeric rating scale for pain severity and the Confusion Assessment Method-Severity short form and Delirium Observation Screening Scale for delirium severity. Linear mixed modeling was used to determine the relationship between rejection of care behaviors and pain and delirium severity for each measure. Results: About 48.9% of the observations included rejection of care, 49.9% included a patient in pain, and 12.5% included a patient with delirium. Cry, push away, scream/yell, and turn away indicated a higher pain severity across pain measures. No rejection of care behaviors were found to indicate delirium severity. Discussion and Implications: Certain rejection of care behaviors may be helpful in identifying pain in hospitalized patients with dementia, suggesting that caregivers should be cognizant of pain when these rejection of care behaviors are present. However, in this sample rejection of care behaviors was not found to be useful for identifying delirium severity in hospital dementia care.

Managing Older Adults' Chronic Pain: Higher-Risk Interventions How to help caregivers promote safe pain management.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses. Cite this article as: Arnstein, P., et al. Managing Older Adults' Chronic Pain: Higher-Risk Interventions. Am J Nurs 2023; 123 (4): 56-61.

Caregiving self-efficacy and pain assessment by family caregivers of people living with dementia.

Like other older adults, people living with dementia (PLWD) experience pain, and the task of pain assessment often falls to family caregivers. In this study, we surveyed family caregivers of PLWD to determine the frequency with which they use different elements of pain assessment. We also determined correlations of family caregivers' characteristics (caregiving self-efficacy, relationship duration and type, mood, education level, and health literacy) with their use of the elements of pain assessment. Participants reported frequent use of many pain assessment elements. Statistically significant correlations were found between caregiving self-efficacy for obtaining respite and asking others about noticed behavior change (rho=.0.41, p=.007); and for responding to disruptive patient behaviors for multiple pain assessment elements including observing pain behaviors (rho=0.49, p<.001), asking others about noticed behavior change (rho=0.54, p<.001) and rechecking (rho=0.56, p<.001). Continued efforts are needed to describe pain assessments by family caregivers of PLWD.

Managing Older Adults' Chronic Pain: Lower-Risk Interventions Nurses can engage family caregivers in creating, implementing, and evaluating the treatment plan.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses. Cite this article as: Arnstein, P., et al. Managing Older Adults' Chronic Pain: Lower-Risk Interventions. Am J Nurs 2023; 123 (2): 46-52.

People Living With Dementia: Dementia Characteristics and Family Caregiver Pain Assessment.

People living with dementia (PLWD) experience pain like other older adults, but with changes due to dementia, they rely more on family caregivers for pain assessment. Many different elements contribute to a pain assessment. Changes in characteristics of PLWD may be associated with changes in the use of these different pain assessment elements. The current study reports associations between PLWD's agitation, cognitive function, and dementia severity and the frequency with which family caregivers use pain assessment elements. In a sample of family caregivers (N = 48), statistically significant associations were found between worsening cognitive function and greater use of rechecking for pain after intervention (rho = 0.36, p = 0.013), and between lower cognitive scores on a subscale of dementia severity and asking others if they have noticed a behavior change in the PLWD (rho = 0.30, p = 0.044). Limited statistically significant associations suggest that, overall, family caregivers of PLWD do not use pain assessment elements more frequently with changes in characteristics of PLWD. [Journal of Gerontological Nursing, 49(7), 17-23.].

Assessing Pain in Older Adults: Caregivers play a key role in recognizing and documenting pain at home.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses. Cite this article as: Horgas, A.L., et al. Assessing Pain in Older Adults. Am J Nurs 2022; 122 (12): 42-48.

Supporting the Health and Well-Being of Caregivers of Persons with Pain.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

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.

Testing the Decision Support Tool for Responsible Pain Management for Headache and Facial Pain Diagnosis with Opioid-Risk-Stratified Treatment.

In primary and urgent care, headache and facial pain are common and challenging to diagnose and manage, especially with using opioids appropriately. We therefore developed the Decision Support Tool for Responsible Pain Management (DS-RPM) to assist healthcare providers in diagnosis (including multiple simultaneous diagnoses), workup (including triage), and opioid-risk-informed treatment. A primary goal was to supply sufficient explanations of DS-RPM's functions allowing critique. We describe the process of iteratively designing DS-RPM adding clinical content and testing/defect discovery. We tested DS-RPM remotely with 21 clinician-participants using three vignettes-cluster headache, migraine, and temporal arteritis-after first training to use DS-RPM with a trigeminal-neuralgia vignette. Their evaluation was both quantitative (usability/acceptability) and qualitative using semi-structured interviews. The quantitative evaluation used 12 Likert-type questions on a 1-5 scale, where 5 represented the highest rating. The mean ratings ranged from 4.48 to 4.95 (SDs ranging 0.22-1.03). Participants initially found structured data entry intimidating but adapted and appreciated its comprehensiveness and speed of data capture. They perceived DS-RPM as useful for teaching and clinical practice, making several enhancement suggestions. The DS-RPM was designed, created, and tested to facilitate best practice in management of patients with headaches and facial pain. Testing the DS-RPM with vignettes showed strong functionality and high usability/acceptability ratings from healthcare providers. Risk stratifying for opioid use disorder to develop a treatment plan for headache and facial pain is possible using vignettes. During testing, we considered the need to adapt usability/acceptability evaluation tools for clinical decision support, and future directions.

Interrupting Biases in the Experience and Management of Pain Nurses can help address challenges faced by racially and ethnically diverse patients and caregivers.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. The articles in this new installment of the series provide practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses. Cite this article as: Booker, S.Q., et al. Interrupting Biases in the Experience and Management of Pain. Am J Nurs 2022; 122(9): 48-54.

Managing Older Adults' Chronic Pain: Higher-Risk Interventions.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Managing Older Adults' Chronic Pain: Lower-Risk Interventions.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Using artificial intelligence to improve pain assessment and pain management: a scoping review.

CONTEXT: Over 20% of US adults report they experience pain on most days or every day. Uncontrolled pain has led to increased healthcare utilization, hospitalization, emergency visits, and financial burden. Recognizing, assessing, understanding, and treating pain using artificial intelligence (AI) approaches may improve patient outcomes and healthcare resource utilization. A comprehensive synthesis of the current use and outcomes of AI-based interventions focused on pain assessment and management will guide the development of future research. OBJECTIVES: This review aims to investigate the state of the research on AI-based interventions designed to improve pain assessment and management for adult patients. We also ascertain the actual outcomes of Al-based interventions for adult patients. METHODS: The electronic databases searched include Web of Science, CINAHL, PsycINFO, Cochrane CENTRAL, Scopus, IEEE Xplore, and ACM Digital Library. The search initially identified 6946 studies. After screening, 30 studies met the inclusion criteria. The Critical Appraisals Skills Programme was used to assess study quality. RESULTS: This review provides evidence that machine learning, data mining, and natural language processing were used to improve efficient pain recognition and pain assessment, analyze self-reported pain data, predict pain, and help clinicians and patients to manage chronic pain more effectively. CONCLUSIONS: Findings from this review suggest that using AI-based interventions has a positive effect on pain recognition, pain prediction, and pain self-management; however, most reports are only pilot studies. More pilot studies with physiological pain measures are required before these approaches are ready for large clinical trial.

Assessing Pain in Older Adults.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Family Caregiver Challenges in Pain Management for Patients with Advanced Illnesses: A Systematic Review.

Although pain management is integral to the caregiving role, there is a paucity of evidence synthesizing specific challenges family caregivers (FCs) face when managing pain for their care partners. This review comprehensively identified and summarized such challenges in the setting of advanced illnesses. Electronic databases (PubMed, CINAHL, PsycINFO, Scopus, and Health and Psychosocial Instruments) were searched using index and keyword methods for all articles published before April 2021. Fifty-five studies were included in this review. Most articles were published within the last 10 years (54%) in community settings, with home hospice care comprising the majority (50%). Most studies included patients with an advanced cancer diagnosis (84%), and 16% of the studies included patients with a noncancer diagnosis. Four major categories of challenges were identified: (1) caregiver-related issues (e.g., fears, beliefs, function), (2) caregivers' limited knowledge and skills in pain management (e.g., verbal and nonverbal pain assessment skills, pharmacological knowledge, documentation, safe management of medication), (3) communication challenges with health care providers, and (4) patient-related issues (e.g., inability to report pain). Many of these challenges have not been fully addressed in prior literature. Thus, this review provides a framework for needed future research to develop interventions that target FCs' specific challenges in providing pain management. The results also highlight a significant lack of research surrounding challenges faced by caregivers of care partners having a noncancer, dementia, or multimorbidity diagnosis.

Interrupting Biases in the Experience and Management of Pain.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. The articles in this new installment of the series provide practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Elderspeak communication and pain severity as modifiable factors to rejection of care in hospital dementia care.

BACKGROUND: Rejection of care (RoC) occurs when persons living with dementia (PLWD) withstand or oppose the efforts of their caregiver. Improvements in hospital dementia care are needed, and one way to address this need is by identifying factors that lead to RoC, particularly those that are modifiable. Elderspeak communication is an established antecedent to RoC among PLWD in nursing homes. The purpose of this study was to extend these results to acute care settings by determining the impact of elderspeak communication by nursing staff on RoC by hospitalized PLWD. METHODS: Care encounters between nursing staff and PLWD were audio-recorded, transcribed verbatim, and coded for semantic, pragmatic, and prosodic features of elderspeak. RoC behaviors was scored in real-time using the Resistiveness to Care Scale. A Bayesian repeated-measures hurdle model was used to evaluate the association between elderspeak and both the presence and severity of RoC. RESULTS: Eighty-eight care encounters between 16 PLWD and 53 nursing staff were audio-recorded for elderspeak and scored for RoC. Nearly all (96.6%) of the encounters included some form of elderspeak. Almost half of the care encounters (48.9%) included RoC behaviors. A 10% decrease in elderspeak was associated with a 77% decrease in odds of RoC (OR = 0.23, 95% CI = 0.03, 0.68) and a 16% decrease ( e ß =  0.84, CI = 0.73, 0.96) in the severity of RoC. A one-unit decrease in pain severity was associated with 73% reduced odds of RoC (OR = 0.27, CI = 0.12, 0.45) and a 28% decrease ( e ß =  0.72, CI = 0.64, 0.80) in the severity of RoC. CONCLUSIONS: Both elderspeak by nursing staff and RoC by PLWD are present and pervasive in acute care. Pain and elderspeak are two modifiable factors of RoC in hospitalized PLWD. Person-centered interventions are needed that address communication practices and pain management for hospitalized PLWD.