For Families or Caregivers: Self-Care is Putting on YOUR Oxygen Mask First [English and Spanish versions]
Document TypeTransitions ACR
Transition Age Youth
family advisory board
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AbstractThis tip sheet was written by the Transitions to Adulthood Center for Research's Family Advisory Board (FAB). The tip sheet is written for the parents and care-givers of young adults with serious mental health conditions. It provides explains why self-care is important and offers self-care tips and resources. A Spanish translation of this publication is available for download.
Permanent Link to this Itemhttp://hdl.handle.net/20.500.14038/44258
RightsCopyright 2019 University of Massachusetts Medical School
Except where otherwise noted, this item's license is described as Copyright 2019 University of Massachusetts Medical School
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Intensive care nurse-family engagement from a global perspective: A qualitative multi-site explorationNaef, Rahel; Tehan, Tara M. (2021-10-01)BACKGROUND: Critical illness is distressing for families, and often results in negative effects on family health that influence a family's ability to support their critically ill family member. Although recent attention has been directed at improving care and outcomes for families of critically ill patients, the manner in which nurses engage with families is not fully understood. OBJECTIVES: To describe nurses' perceptions and practices of family engagement in adult intensive care units from a global perspective. DESIGN: A qualitative-descriptive multi-site design using content analysis. SETTINGS: The study was conducted in 26 intensive care units of 12 urban, metropolitan, academic medical centers in ten countries, spanning five continents. PARTICIPANTS: A total of 65 registered nurses (77% women, age of M = 39.5, SD = 11.4 years) participated. Most held intensive care certification (72%) and had worked on average 10 (SD = 9.6) years in the ICU. METHODS: Semi-structured, individual interviews (M = 38.4 min, SD = 12.0) were held with ICU nurses at the hospital (94%) or their home using an interview guide. Qualitative interview data were analysed using inductive content analysis. RESULTS: We found that nurse-family engagement was an ebb and flow of relational power that needed to be carefully negotiated and balanced, with nurses holding and often exerting more power than families. Constant fluctuations in nurses' practices of engagement occurred in day-to-day practice from shift-to-shift and from nurse-to-nurse. Family engagement was dependent on individual nurses' attitudes and perceptions of family, the patient's condition, and workload. Lastly, family engagement was shaped by the ICU context, with team culture, collaborative relationships, unit structures and organizational resources either enabling or limiting nurses' ability to engage with families. CONCLUSIONS: This global study provides an in-depth understanding of the way nurses engage with families in ICU and reflects many different cultures and health systems. We found that nurse-family engagement was marked by a shifting, yet often unequal power distribution in the nurse-family relationship, inconsistent nurse engagement practices, both of which resulted in variable family engagement in intensive care. Our research contributes a detailed description of engagement as practiced in the everyday delivery of health care. A more concentrated team effort, based on a shared culture and defined framework of family care is needed to ensure that families of critically ill persons are fully engaged in all aspects of intensive care.
Educating Grandparents of Grandchildren with Type I Diabetes Using Simulation: A DissertationMaguire, Laura L. (2015-05-07)The purpose of this study was to explore the feasibility of using human patient simulation (HPS) to teach Type 1 diabetes (T1DM) management to grandparents of grandchildren with T1DM. Thirty grandparents (11 male, 19 female) of young grandchildren (aged 12 and under) with T1DM were recruited from an urban medical center. Experimental group (n = 14) grandparents received hands-on visual T1DM management education using an HPS intervention, and control group (n = 16) grandparents received similar education using a non-HPS intervention. Post-intervention, researchers interviewed twelve grandparents (50% HPS, 50% non-HPS) who scored highest and lowest on the Hypoglycemia Fear Survey. Using a mixed-method design, researchers integrated study instrument data and post-intervention interview data to describe grandparent’s experience learning T1DM management. Post-intervention, grandparent scores for knowledge, confidence, and fear showed no significant difference by group assignment, however, all grandparent scores showed improvement from Time 1 to Time 2. Grandparents described how taking part in T1DM education heightened their awareness of T1DM risks. GP T1DM knowledge gains aided GPs to make sense of T1DM risks. Newfound T1DM knowledge enhanced GP T1DM management confidence. Improved T1DM knowledge and confidence helped to defuse T1DM management fear. Although study instruments did not measure significant difference between grandparents who received the HPS intervention and those who did not, the consistency of larger HPS-taught grandparent score improvement is suggestive of a benefit for HPS.
The Family Networks Implementation StudyMaciolek, Susan; Nicholson, Joanne; Dube, Nicole; Adams, Jodi; Gershenson, Bernice (2008-02-01)Family Networks is a comprehensive system transformation initiative to redesign and integrate traditional categorical services across Massachusetts into local systems of care for children, youth, and families served by the child welfare system. The Family Networks Implementation Study, a partnership between the Massachusetts Department of Social Services and the University of Massachusetts Medical School, is a two-year study of the process of implementing local systems of care that began in January 2007, and will continue through December 2008.