Multi-pronged approach to enhance education of children and adolescents with lupus, caregivers, and healthcare providers in New Jersey: Needs assessment, evaluation, and development of educational materials.

BACKGROUND: Childhood Systemic Lupus Erythematosus (cSLE) patients are younger at diagnosis and have a more severe disease course compared to adult onset SLE patients and develop significant complications related to disease and or immunosuppression. Moreover, female and minority populations experience higher rates of cSLE, with African American, Afro-Caribbean, and Hispanic populations being at greatest risk and having poor prognosis. METHODS: The Pediatric Alliance for Lupus initiative addressed the dearth in education and resources in a multi-stage process. First, we conducted a need assessment identifying knowledge gaps among healthcare providers (HCPs), and resources needed to care for cSLE patients and their families. Second, we educated HCPs about the diagnosis and treatment of cSLE by Continuing Medical Education (CME) sessions/webinars (presented here). Third, HCPs participated in a Quality Improvement (QI) program on cSLE approved by the American Board of Pediatrics Maintenance of Certification Part 4. Finally, patients and caregivers were educated through the development of appropriate, culturally and linguistically sensitive cSLE resources. PAL disseminated materials among HCPs and the community to improve the awareness of the availability of these materials. RESULTS: According to results from the statewide needs assessment (representative of every county throughout NJ), HCPs face significant challenges in providing care to cSLE patients and their families, in part due to the multi-systemic nature of the autoimmune disease. CONCLUSION: Based on this need, we developed educational sessions, with pre-post comparison data showing a significant increase in knowledge after HCP education. The 15 different materials developed as part of the endeavor is a major contribution to the cSLE community, HCPs and pediatric rheumatologists. Resources are available in multiple formats (PDF and web pages), and are accessible on the National Resource Center on Lupus, the latest web site of the Lupus Foundation of American that houses materials for SLE patients, their families, schools, HCPs, and the community at large.Improving cSLE knowledge will empower the children and adolescents and families by increasing their self-efficacy; and positively impact key health outcomes (transition readiness and HRQOL) that are not optimally addressed with current medical treatment alone.

Life stories and biography: a means of connecting family and staff to people with dementia.

AIMS: This article assesses the Family Biography Workshop (FBW) designed to support family and staff to co-construct the history of the person with dementia in residential care. BACKGROUND: Family-staff conflict in residential dementia care is a major stressor that disturbs effective relationships and contributes to stress. Biographical research has been found to improve communication and promote family-staff relations. Few studies focus on family biography as an approach that promotes positive relations that translate into inclusive care interactions. DESIGN: A qualitative descriptive approach was used to assess the influence of participation in the FBW and the impact of developing biographical knowledge on family-staff caregiver attitudes, perceptions of roles, conflict and the subsequent management of stress using participatory care practices. METHODS: The FBW process involved seven family caregivers, seven staff and one researcher working collaboratively through a series of six weekly two-hour sessions, designed to help them build a biography of the person with dementia. RESULTS: For family caregivers, reviving memories of their relatives as 'whole' persons enabled some to 'stand outside' and see beyond the disease-saturated context. For staff, 'opening possibilities' of 'seeing' the resident within the family context empowered them to engage in genuine participatory practices. Residents benefited from being connected as staffs''know how' in initiating and engaging developed. CONCLUSION: Future research will examine the effects of the FBW on the dynamics of family-staff roles and relationships. This research aims to reduce stress from role inadequacy, task burden, poor relationships and improve staff attitudes towards family participation. RELEVANCE TO CLINICAL PRACTICE: This study substantiated the FBW by revealing understanding of the meaning of biography work for family and relatives in care; providing effective support that empowered staff to confidently relate; and fostering engagement in inclusive care practices that encouraged residents' initiatives.