A Conceptual Framework and Key Research Questions in Educational Needs of Blood and Marrow Transplantation Patients, Caregivers, and Families

Abstract

Patient, caregiver, and family education and support was 1 of 6 key areas of interest identified by the National Marrow Donor Program/Be The Match 2-year project to prioritize patient-centered outcomes research (PCOR) goals for the blood and marrow transplantation (BMT) community. PCOR focuses on research to help patients and their caregivers make informed decisions about health care. Therefore, each area of interest was assigned to a working group with broad representation, including patients, caregivers, and clinicians. Each working group was charged with identifying gaps in knowledge and making priority recommendations for critical research to fill those gaps. The report from this working group presents a conceptual framework to address gaps in knowledge regarding patient and caregiver education in BMT and recommendations for priority research questions on this topic.

Prevalence of decisional regret among patients who underwent allogeneic hematopoietic stem cell transplantation and associations with quality of life and clinical outcomes

“…Successful education has been associated with decreased distress and increased patient satisfaction by better preparing patients for the transplantation process. Although to our knowledge not formally assessed in the current literature, regret among patients undergoing transplantation likely may stem from education that is not appropriately tailored to the cultural background, barriers to learning, and preferential learning styles of these individuals . Future research may use qualitative methods to better understand which type of regret is more prevalent among patients who have undergone transplantation and whether the regret is rooted in dissatisfaction with education, with consenting to transplantation, or something else.…”

“…Although to our knowledge little research has been done to address regret after HCT, some research points to opportunities in the educational process as having significant potential to mitigate postdecisional regret. It is known that educational materials and delivery methods should be objective and accurate because patients undergoing transplantation tend to overestimate the benefits of BMT . Successful education has been associated with decreased distress and increased patient satisfaction by better preparing patients for the transplantation process.…”

“…It is known that educational materials and delivery methods should be objective and accurate because patients undergoing transplantation tend to overestimate the benefits of BMT . Successful education has been associated with decreased distress and increased patient satisfaction by better preparing patients for the transplantation process. Although to our knowledge not formally assessed in the current literature, regret among patients undergoing transplantation likely may stem from education that is not appropriately tailored to the cultural background, barriers to learning, and preferential learning styles of these individuals .…”

Nursing Intervention for Caregivers of Post Autologous Bone Marrow Transplantation Patients at Home

“…More longterm education results might include improvement in survival and transplantation morbidity, accessibility of health care, willingness of patients / caregivers to return to work, and quality of life. 12,13 other study revealed that the preparation of family caregivers for their position must include clear education, including skills training. Preparing caregivers should be an ongoing process such that benefits are maintained and education programmes develop as required.…”

“…Currently, the Health Care Management System offers some assistance to spouses who perform the function of caregivers. 5,13 With regard to time of treatment. In addition, there were statistically significant differences between the pre-and post-intervention programme, the current research in the same line of the previous study showed that full-time caregivers offer more support and can apply the information acquired by the caregiver from the programme.…”