Short-term Focused Feedback: A Model to Enhance Patient Engagement in Research and Intervention Delivery
BACKGROUND: Our grant from the Patient-Centered Outcomes Research Institute (PCORI) focused on the use of nurse home visits postdischarge for primarily pediatric hospital medicine patients. While our team recognized the importance of engaging parents and other stakeholders in our study, our project was one of the first funded to address transitions of care issues in patients without chronic illness; little evidence existed about how to engage acute stakeholders longitudinally. OBJECTIVE: This manuscript describes how we used both a short-term focused feedback model and longitudinal engagement methods to solicit input from parents, home care nurses, and other stakeholders throughout our 3-year study. RESULTS: Short-term focused feedback allowed the study team to collect feedback from hundreds of stakeholders. Initially, we conducted focus groups with parents with children recently discharged from the hospital. We used this feedback to modify our nurse home visit intervention, then used quality improvement methods with continued short-term focus feedback from families and nurses delivering the visits to adjust the visit processes and content. We also used their feedback to modify the outcome collection. Finally, during the randomized controlled trial, we added a parent to the study team to provide longitudinal input, as well as continued to solicit short-term focused feedback to increase recruitment and retention rates. CONCLUSION: Research studies can benefit from soliciting short-term focused feedback from many stakeholders; having this variety of perspectives allows for many voices to be heard, without placing an undue burden on a few stakeholders.
Sauers-Ford H; Statile AM; Auger KA; Wade-Murphy S; Gold JM; Simmons JM; Shah SS
Medical Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/mlr.0000000000001588" target="_blank" rel="noreferrer noopener">10.1097/mlr.0000000000001588</a>
Factors influencing death at home in terminally ill patients with cancer: systematic review
Humans; Attitude to Death; Health Services Accessibility; Death; Risk Factors; Patient Satisfaction; Time Factors; Residence Characteristics; House Calls; social support; Hospitalization/statistics & numerical data; Terminally Ill/statistics & numerical data; location of death; Neoplasms/psychology/therapy; Home Care Services/standards/statistics & numerical data/utilization; Terminal Care/psychology/statistics & numerical data/utilization
OBJECTIVES: To determine the relative influence of different factors on place of death in patients with cancer. DATA SOURCES: Four electronic databases-Medline (1966-2004), PsycINFO (1972-2004), CINAHL (1982-2004), and ASSIA (1987-2004); previous contacts with key experts; hand search of six relevant journals. REVIEW METHODS: We generated a conceptual model, against which studies were analysed. Included studies had original data on risk factors for place of death among patients, > 80% of whom had cancer. Strength of evidence was assigned according to the quantity and quality of studies and consistency of findings. Odds ratios for home death were plotted for factors with high strength evidence. RESULTS: 58 studies were included, with over 1.5 million patients from 13 countries. There was high strength evidence for the effect of 17 factors on place of death, of which six were strongly associated with home death: patients' low functional status (odds ratios range 2.29-11.1), their preferences (2.19-8.38), home care (1.37-5.1) and its intensity (1.06-8.65), living with relatives (1.78-7.85), and extended family support (2.28-5.47). The risk factors covered all groups of the model: related to illness, the individual, and the environment (healthcare input and social support), the latter found to be the most important. CONCLUSIONS: The ne of factors that influence where patients with cancer die is complicated. Future policies and clinical practice should focus on ways of empowering families and public education, as well as intensifying home care, risk assessment, and training practitioners in end of life care.
2006
Gomes B; Higginson IJ
Bmj (clinical Research Ed.)
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/bmj.38740.614954.55" target="_blank" rel="noreferrer">10.1136/bmj.38740.614954.55</a>