Physical pain among family caregivers to older adults: A scoping review of the literature.

BACKGROUND AND OBJECTIVES: Scholarship on the health of family caregivers to older adults continues to expand. Although existing research suggests that many family caregivers experience pain, which impacts their ability to perform caregiving tasks and is associated with care recipients' unmet needs, the scope of research on family caregivers' pain remains poorly characterized. We conducted a scoping review of research on pain among family caregivers to older adults to characterize existing evidence and identify knowledge gaps. METHODS: We searched multiple databases spanning from January 2012 to July 2023, identified eligible studies using predefined inclusion/exclusion criteria, and extracted key data (e.g., study design/methodology, pain measurement, caregiver pain type, and major findings). RESULTS: We identified 46 eligible studies conducted in the United States (n = 19) and internationally (n = 27). Studies often focused on caregivers for older adults with specific health conditions, such as cancer (n = 11), dementia (n = 8), or stroke (n = 3). The most commonly employed pain measure was a single-item dichotomous question about pain (n = 16), followed by a visual numeric or visual analog scale (n = 11). Nine studies (five randomized controlled trials) reported on five caregiver pain management interventions, including yoga/exercise programs and caregiver education programs. DISCUSSION: Existing research on family caregivers' pain offers an important foundation. However, more robust research designs are necessary. We identify possibilities for future studies in addition to opportunities for systematic investigations to support the family caregivers being relied upon to care for the increasing number of older adults.

Bridging the Gap Between Aging Research and Practice: A New Strategy for Enhancing the Consensus Workshop Model.

Objectives: The Cornell Research-to-Practice (RTP) Consensus Workshop Model is a strategy for bridging the gap between aging research and practice but lacks a technique for evaluating the relative importance of ideas. This project assessed the feasibility of adding a quantitative survey to the RTP model to address this gap. Method: Older adults with cancer (OACs), OAC caregivers, researchers, clinicians, and advocacy organization representatives participated in a RTP workshop on implementing psychological interventions for OACs. Following an in-person workshop, participants completed surveys assessing the relative importance of barriers and strategies for psychological intervention implementation. Results: Seventeen of 35 participants completed the survey, the majority of which were likely clinicians. Barriers and strategies to implementation rated as having the greatest impact were associated with the care team and institutional factors. Conclusion: Quantitative ratings add novel information to the RTP model that could potentially enhance the model's impact on aging research and practice.

Improving implementation of psychological interventions to older adult patients with cancer: Convening older adults, caregivers, providers, researchers.

INTRODUCTION: Older adults with cancer (OACs) are a large and growing population. Psychological distress is prevalent in this population yet few OACs receive evidence-based psychological care. The purpose of this project was to identify barriers and strategies for the implementation of psychological interventions to OACs from the perspective of OACs, OAC caregivers, researchers, clinicians, and advocacy organization members. METHODS: The Cornell Research-to-Practice (RTP) Consensus Workshop Model was used to organize and convene a consensus conference. The one-day conference consisted of small and large group discussions regarding barriers, facilitators, and strategies for the implementation of psychological interventions targeting OACs. A half-day roundtable meeting was subsequently conducted to organize data generated at the conference. De-identified transcriptions of the small group discussions were uploaded into NVivo 11 software and qualitatively analyzed using standard methods. RESULTS: Thirty-five participants attended the consensus conference from across stakeholder groups. Three themes related to implementation barriers were identified: lack of knowledge about psychological interventions in patients and providers; personal and social factors associated with being an OAC; and institutional-level factors. Themes related to implementation strategies focused on increasing awareness, tailoring interventions for older adults, and modifying institutional-level factors. DISCUSSION: Effective implementation of psychological interventions to OACs is complex and barriers exist across multiple levels of care. However, this project indicates that implementation can be improved in various ways that include all members of the healthcare system. Further clarification of implementation strategies and rigorous evaluation of their effectiveness is vital to improving care and care outcomes of OACs.

Decision Support for Joint Replacement: Implications for Decisional Conflict and Willingness to Undergo Surgery.

Objectives: The present study investigates age differences in the types of decision support that total joint replacement (TJR) candidates desire and receive when making the decision to pursue surgery. We consider the social structural (relationship to the patient) and experiential factors (network members' experience with TJR) that influence individuals' support preferences and the interactions of these factors with age. We also examine whether a lack of support is linked with increased decisional conflict and reduced willingness to undergo surgery. Method: A telephone survey was conducted with 100 individuals (aged 40+) who were contemplating knee or hip replacement. Results: TJR candidates desired and received decision support from health care providers, family members, and individuals who had previously undergone TJR. They reported higher deficits in informational and emotional support than in instrumental support. Overall, a lack of instrumental support was associated with greater decisional conflict; a lack of instrumental support and a lack of informational support were associated with reduced willingness to undergo TJR. Discussion: Our findings point to the importance of involving both formal and informal network members in TJR discussions, and the need for informational guidance and practical assistance to reduce decisional conflict and uncertainty among individuals considering TJR.

Practice-Based Research Priorities for Palliative Care: Results From a Research-to-Practice Consensus Workshop.

We employed the research-to-practice consensus workshop (RTP; workshops held in New York City and Tompkins County, New York, in 2013) model to merge researcher and practitioner views of translational research priorities in palliative care. In the RTP approach, a diverse group of frontline providers generates a research agenda for palliative care in collaboration with researchers. We have presented the major workshop recommendations and contrasted the practice-based research priorities with those of previous consensus efforts. We uncovered notable differences and found that the RTP model can produce unique insights into research priorities. Integrating practitioner-identified needs into research priorities for palliative care can contribute to addressing palliative care more effectively as a public health issue.

Why is high-quality research on palliative care so hard to do? Barriers to improved research from a survey of palliative care researchers.

BACKGROUND: Substantial agreement has been achieved on research priorities in palliative care over the past 15 years, as evidenced by consensus conferences and systematic reviews. Despite the presence of a widely endorsed research agenda, however, addressing the gaps in scientific knowledge has progressed slowly, suggesting that researchers face significant obstacles to conducting high-quality research on the most pressing topics in the field. OBJECTIVE: To systematically identify barriers to improved and expanded palliative care research as reported by researchers. DESIGN: Semistructured telephone interviews to solicit barriers to research in palliative care. SETTING/SUBJECTS: A purposive, interdisciplinary sample of 61 leading researchers in palliative care. MEASUREMENTS: Interviews were transcribed and analyzed using standard qualitative methods. RESULTS: Respondents named five barriers impeding progress: (1) funding, (2) institutional capacity, (3) researcher workforce, (4) challenges related to the topic and population (e.g., attrition, heightened human subjects protections), and (5) public and professional misunderstanding of palliative care and aversion to topics related to serious illness and end-of-life. CONCLUSIONS: Research in palliative care is being held back by significant barriers that require the attention of institutions and funders. The consensus within the interdisciplinary sample indicates that concentrated effort to address barriers related to funding and researcher workforce could facilitate progress on established research priorities. More research is needed on viable strategies for overcoming the identified barriers.

Measuring the value of program adaptation: a comparative effectiveness study of the standard and a culturally adapted version of the arthritis self-help program.

BACKGROUND: Arthritis remains an important public health problem. QUESTIONS/PURPOSES: This study aims to determine the effects of an adapted (vs. the original) Arthritis Self-Help Program (ASHP) among older adults. Specifically, this study sought to determine (1) whether the adapted ASHP improved attendance, retention, and adherence with the use of self-management exercises, and (2) if the original ASHP's beneficial outcomes were maintained following program adaptation. PATIENT AND METHODS: Individuals age ≥60 with self-reported arthritis were recruited from eight New York City senior centers. Participants were assessed at baseline to assess their demographic and clinical status and at 6 and 24 weeks to ascertain study outcomes using validated measures. RESULTS: Two-hundred-one participants (64 non-Hispanic African Americans, 86 Hispanics, and 51 non-Hispanic Whites) enrolled. Participants in the adapted (vs. original) ASHP had better average attendance in the six session program (4.7 vs. 3.2 classes attended, p < 0.01) and program retention (93% vs. 74%, p < 0.01). Adherence with use of the self-management exercises (number of days using endurance, stretching, and relaxation exercises) was similar in both groups. Significant positive physical/psychosocial outcomes were documented in both the adapted and original program. CONCLUSION: The adapted ASHP improved program attendance and retention while maintaining improvements in physical and psychosocial functions. These results support future efforts to employ controlled designs to quantify the benefits of adapted evidence-based programs to ensure that adaptation maintains program effectiveness.

Preparing to implement a self-management program for back pain in new york city senior centers: what do prospective consumers think?

OBJECTIVE: Prior to testing the feasibility/potential efficacy of a newly developed self-management pain program for seniors with back pain, this study sought to: 1) determine prospective consumers' prior exposure to self-management pain programs, 2) determine their willingness to participate in the new program, and 3) ascertain perceived barriers/facilitators to program participation. DESIGN: Cross-sectional survey. SETTING: Six senior centers located in New York City. PARTICIPANTS: We enrolled a race/ethnicity stratified (African American, Hispanic, or non-Hispanic White) sample of 90 subjects who were ages 60 years or older and had chronic back pain. RESULTS: While 60% of non-Hispanic Whites reported prior participation in a self-management pain program, fewer Hispanic (23%) and African Americans (20%) participants reported prior participation. Most participants (80%) were strongly willing to participate in the new program. Multivariate analyses revealed that only pain intensity had a trend toward significance (P = 0.07), with higher pain scores associated with greater willingness to participate. Few barriers to participation were identified, however, respondents felt that tailoring the course to best meet the needs of those with physical disabilities, providing flexibility in class timing, and informing individuals about program benefits prior to enrollment could help maximize program reach. No race/ethnicity differences were identified with respect to willingness to participate or program participation barriers. CONCLUSIONS: These data support efforts to disseminate self-management pain programs in older populations, particularly minority communities. The recommendations made by participants can help to guide implementation efforts of the newly developed pain program and may help to enhance both their reach and success.