Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers.

PURPOSE: With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care. METHODS: A three-round, online Delphi survey took place. In round 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses. RESULTS: In round 1, eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers. CONCLUSION: By establishing a confluence of perspectives around research priorities, this study ensures the interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy.

The effect of culturally-adapted health education interventions among culturally and linguistically diverse (CALD) patients with a chronic illness: A meta-analysis and descriptive systematic review.

OBJECTIVE: To review the effectiveness of health education interventions adapted for culturally and linguistically diverse (CALD) populations with a chronic illness. METHODS: A systematic review and meta-analysis were conducted. Eligible studies were identified across six databases. Data were extracted and intervention effect was summarized using standardized mean difference. If there were insufficient data for meta-analysis, a descriptive summary was included. Modifying effects of intervention format, length, intensity, provider, self-management skills taught, and behavioral change techniques (BCTs) utilized were examined. RESULTS: 58 studies were reviewed and data were extracted for 36 outcomes. Most interventions used multiple modes of delivery and were facilitated by bilingual health care professionals (HCPs). On average, interventions included 5.19 self-management skills and 4.82 BCTs. Interventions were effective in reducing BMI, cholesterol, triglycerides, blood glucose, HbA1C, and depression, and in increasing knowledge. Effectiveness was influenced partly by provider, with HCPs favored over lay providers or paraprofessionals in increasing knowledge; however, the opposite was noted for HbA1c. CONCLUSIONS: Health education interventions are effective among CALD populations, particularly at improving objective, distal outcomes (e.g., anthropometric measures). These interventions may be equally effective in improving proximal patient-reported outcomes (PROs); however, diversity in PROs limited analyses. PRACTICE IMPLICATIONS: Core outcome sets (COS) are needed to further investigate and compare health education intervention effectiveness on PROs.

Acceptability and Usefulness of a Dyadic, Tailored, Web-Based, Psychosocial and Physical Activity Self-Management Program (TEMPO): A Qualitative Study.

Caregivers of men with prostate cancer report high burden, and there is a need to develop cost-effective programs to support them in their roles. This study reports on the acceptability of a dyadic, Tailored, wEb-based, psychosocial and physical activity (PA) self-Management PrOgram called TEMPO. TEMPO was accessed by a convenience sample of 19 men with prostate cancer and their caregivers (n = 18), as well as six health care professionals (HCPs). User feedback was gathered via semi-structured qualitative interviews. Data were analyzed using thematic analysis. Most dyads were satisfied with TEMPO, particularly with the dyadic feature of TEMPO, the focus on goal setting to integrate self-management, and the extensive health library. The patients and caregivers motivated each other as they worked through TEMPO. Most goals to achieve during TEMPO pertained to increasing PA, followed by learning physical symptom management. One unanticipated benefit of TEMPO for the dyads was improved communication. HCPs agreed that TEMPO was a novel approach to online cancer self-management and they echoed the benefits reported by dyads. Key suggestions for improving TEMPO were to reduce repetition, tailor content, add more exercise ideas, and have more printing options. This study provides a strong foundation on which to plan a larger trial.