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Many childhood deaths in the United States occur in pediatric intensive care units (PICUs) and parents have special needs in this death context. As an interdisciplinary research team, we discuss conceptual and design issues encountered in creating a new instrument, the Bereaved Parent Needs Assessment-PICU, for assessing parents' needs in this setting. ⋯ We describe using this qualitative foundation in the development of a new quantitative instrument to more widely validate and measure bereaved parents' needs around the time of a child's death across multiple PICUs. We highlight a series of issues that warrant consideration in designing a research instrument for this vulnerable population including setting and context, format and content, temporality, recruitment, and content expertise.
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Parents who have experienced the death of a child from cancer have unique bereavement needs. This study evaluated the possibility of instituting a home-based bereavement visit from the oncology team following a child's death. ⋯ Qualitative analysis of parental comments revealed common themes including processing grief, practical suggestions for visit, recognition of individual differences, perceived risks and benefits of visit, connections with medical staff, and unmet needs for support. In conclusion, a home visit program may satisfy needs for additional support while alleviating barriers to other types of bereavement care.
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While complicated grief has been addressed in part through some recommendations for modifications in the upcoming fifth version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there remain reasons for substantial concern about its scope therein and within clinical practice. The authors issue a call to the field, reiterating that complicated grief is complicated and cannot be confined to just one syndrome or disorder. Continued research is urged, and specific caveats are identified for exploring the complex dimensions of loss and grief. The authors advocate for ongoing dialogue about and investigation of various potential forms of complicated grief.
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Botswana, a country in sub-Saharan Africa, has been in the midst of an HIV/AIDs pandemic that has halted its previously lengthening life expectancy trend. However, one group to escape immediate effects on falling life span is the oldest old age group (> 80 years). Their roles in the community due to the pandemic, however, have changed. ⋯ Most stated causes of death (62.4%) were listed as "unknown." Most oldest-old Batswana died in rural areas (70.1%), and in rural areas, proportionally more oldest old died at home compared to cities and towns. On multivariate analysis, being a woman > 80 years of age at death predicted home death. Future longitudinal study needs to determine preferences of place of death and the quality of death of Batswana > 80 years, especially women.
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A growing body of evidence has pointed to the stressful experience surrounding surrogate decision-making on behalf of incapacitated patients. This study (N = 59) asked surrogates to speak about their experiences immediately after having made a life-sustaining treatment decision. Grounded theory analysis revealed four themes: (1) the emotional impact of the decision-making process on the surrogate; (2) the difficulty of watching a loved one's health deteriorate; (3) the importance of having a Living Will (LW) or other written/verbal instructions; and (4) the reliance on spirituality as a means of coping with the surrogate experience. Findings of this study suggest that engaging surrogates at the time of patient admission may be essential in order to clarify patient preferences and strengthen communication between surrogates and the interdisciplinary healthcare team.