ABSTRACT
Covid-19 has profoundly impacted social work and has exposed the existing inequities in the health care system in the United States. Social workers play a critical role in the pandemic response for historically marginalized communities and for those who find themselves needing support for the first time. Innovative approaches to care management, including the Center for Health and Social Care Integration (CHaSCI) Bridge Model of transitional care provides a foundation from which social workers can rise to meet these new challenges.
Subject(s)
COVID-19/epidemiology , Delivery of Health Care/organization & administration , Multiple Chronic Conditions/epidemiology , Patient Care Management/organization & administration , Social Work/organization & administration , Aged , Aged, 80 and over , Humans , Interinstitutional Relations , Mental Health Services/organization & administration , Pandemics , Patient-Centered Care/organization & administration , SARS-CoV-2 , Self-Management , Telemedicine/organization & administration , United States/epidemiologyABSTRACT
BACKGROUND: The nature and quality of end-of-life care received by adults with intellectual disabilities in out-of-home, non-institutional community agency residences in Western nations is not well understood. METHOD: A range of databases and search engines were used to locate conceptual, clinical and research articles from relevant peer-reviewed journals. RESULTS: The present authors present a literature review of the agency, social and healthcare supports that impact end-of-life care for adults with intellectual disabilities. More information is needed about where people with intellectual disabilities are living at the very end of life and where they die. CONCLUSIONS: The support needs for adults with intellectual disabilities will change over time, particularly at the end of life. There are some areas, such as removing barriers to providing services, staff training, partnerships between agencies and palliative care providers, and advocacy, where further research may help to improve the end-of-life care for adults with intellectual disabilities.
Subject(s)
Intellectual Disability , Persons with Mental Disabilities/psychology , Social Support , Terminal Care , HumansABSTRACT
This study evaluated parents' and health care providers' (HCPs) descriptions of hope following counseling of parents at risk of delivering an extremely premature infant. Data came from a longitudinal multiple case study investigation that examined the decision making and support needs of 40 families and their providers. Semistructured interviews were conducted before and after delivery. Divergent viewpoints of hope were found between parents and many HCPs and were subsequently coded using content analysis. Parents relied on hope as an emotional motivator, whereas most HCPs described parents' notions of hope as out of touch with reality. Parents perceived that such divergent beliefs about the role of hope negatively shaped communicative interactions and reduced trust with some of their providers. A deeper understanding of how varying views of hope might shape communications will uncover future research questions and lead to theory-based interventions aimed at improving the process of discussing difficult news with parents.
Subject(s)
Communication , Directive Counseling/methods , Infant, Extremely Premature/psychology , Patient Education as Topic/methods , Professional-Family Relations , Social Perception , Adult , Decision Making , Female , Health Knowledge, Attitudes, Practice , Hospitals , Humans , Infant, Newborn , Interview, Psychological , Longitudinal Studies , Male , Peer Group , Qualitative Research , Tape Recording , Truth DisclosureABSTRACT
Most deaths of extremely premature infants occur in the perinatal period. Yet, little is known about how parents make life support decisions in such a short period of time. In the paper, how parents make life support decisions for extremely premature infants from the prenatal period through death from the perspectives of parents, nurses, and physicians is described. Five cases, comprised of five mothers, four neonatologists, three nurses, and one neonatal nurse practitioner, are drawn from a larger collective case study. Prenatal, postnatal and end-of-life interviews were conducted, and medical record data were obtained. In an analysis by two research team members, mothers were found to exhibit these characteristics: desire for and actual involvement in life support decisions, weighing pain, suffering and hope in decision making, and wanting everything done for their infants. All mothers received decision making help and support from partners and family, but relationships with providers were also important. Finally, external resources impacted parental decision making in several of the cases. By understanding what factors contribute to parents' decision making, providers may be better equipped to prepare and assist parents when making life support decisions for their extremely premature infants.
Subject(s)
Attitude to Death , Decision Making , Infant, Extremely Low Birth Weight/psychology , Life Support Care/psychology , Parents/psychology , Premature Birth/psychology , Adult , Female , Humans , Infant, Newborn , Life Change Events , Male , Mothers/psychology , Neonatal Nursing/methods , Nursing Methodology Research , Parents/education , Pregnancy , Premature Birth/nursing , Surveys and Questionnaires , Truth Disclosure , Withholding Treatment , Young AdultABSTRACT
OBJECTIVE: To describe nurse behaviors that assisted parents to make life-support decisions for an extremely premature infant before and after the infant's birth. DESIGN: Qualitative, longitudinal, collective case study where interviews were done pre- and postnatally and medical chart data were collected. SETTING: Interviews were conducted face-to-face in a private room in the hospital, in the mother's home, or over the telephone. PARTICIPANTS: A sample of 40 cases (40 mothers, 14 fathers, 42 physicians, 17 obstetric nurses, 6 neonatal nurses, and 6 neonatal nurse practitioners) was recruited from three hospitals that provided high-risk perinatal care. Parents were at least 18 years of age, English speaking, and had participated in a prenatal discussion with a physician regarding treatment decisions for their infant due to threatened preterm delivery. Physicians and nurses were those identified by parents who had spoken to them about life-support treatment decisions for the infant. METHODS: Using a semistructured interview guide, a total of 203 interviews were conducted (137 prenatal, 51 postnatal, and 15 end-of-life). For this analysis, all coded data related to the nurse's role were analyzed and summarized. RESULTS: Parents and nurses described several nurse behaviors: providing emotional support, giving information, and meeting the physical care needs of mothers, infants, and fathers. Physicians' description of the nurse behaviors focused on the way nurses provided emotional support and gave information. CONCLUSIONS: Nurses play a critical role in assisting parents surrounding life-support decisions.
Subject(s)
Decision Making , Infant, Premature , Life Support Care/psychology , Nurse's Role/psychology , Parents/psychology , Professional-Family Relations , Adult , Attitude of Health Personnel , Attitude to Health , Female , Helping Behavior , Humans , Infant, Newborn , Intensive Care, Neonatal/psychology , Longitudinal Studies , Male , Neonatal Nursing/methods , Nursing Methodology Research , Parents/education , Qualitative Research , Social Support , Surveys and QuestionnairesABSTRACT
Parents who are at risk for giving birth to an extremely premature infant, defined as 22 to 25 weeks' gestation, can find themselves faced with urgent treatment decisions for their unborn infant that have life-altering consequences. Despite the recommendation for involving parents in decision making for these infants, there is limited evidence regarding guidelines for involving parents. In this article, we describe a case from a larger collective case study that examines the decision making and the decision support needs of parents regarding life support decisions made over time (prenatally and postnatally) for extremely premature infants from the perceptions of parents, physicians, and nurses. For this case study, we describe decisions that were made during the antenatal hospitalization of the mother whose infant was stillborn, the support the parents received, and advice for healthcare professionals for improving care to families. For this case, the mother and father, a physician, and 2 nurses were interviewed before the birth of the infant. The findings in this case study demonstrate the importance of the nurse being present when information is given to parents, of informing with compassion, and helping parents to understand treatment options and decisions.
Subject(s)
Attitude of Health Personnel , Attitude to Health , Decision Making , Parents , Premature Birth/psychology , Social Support , Adult , Advance Care Planning , Communication , Female , Humans , Infant, Newborn , Male , Needs Assessment , Neonatal Nursing , Nurse's Role/psychology , Nursing Assessment , Nursing Methodology Research , Parents/education , Parents/psychology , Patient Education as Topic , Pregnancy , Pregnancy Trimester, Second , Stillbirth/psychology , Surveys and QuestionnairesABSTRACT
The recruitment and retention of research participants always presents challenges to researchers. This process is made more complicated when the research being undertaken is socially sensitive and the populations of interest are considered vulnerable. The purpose of this article is to illustrate how Swanson's middle-range theory of caring can be used as a framework for recruitment and retention for studies on sensitive topics that involve vulnerable participants. We provide an overview of the theory as well as illustrations from three separate studies that involved in-depth interviews with vulnerable participants. These studies included parents who had either experienced the death of their infant or were involved in life support decisions because of potentially giving birth to an extremely premature infant (22-25 weeks gestation).
Subject(s)
Empathy , Nursing Theory , Patient Selection , Researcher-Subject Relations/psychology , Adaptation, Psychological/ethics , Black or African American/ethnology , Attitude of Health Personnel/ethnology , Attitude to Health/ethnology , Fetal Death/ethnology , Humans , Intensive Care, Neonatal/ethics , Intensive Care, Neonatal/psychology , Life Support Care/ethics , Life Support Care/psychology , Nurse's Role/psychology , Nursing Methodology Research/ethics , Nursing Methodology Research/organization & administration , Parents/psychology , Patient Dropouts/psychology , Patient Selection/ethics , Principle-Based Ethics , Research Design , Researcher-Subject Relations/ethics , Vulnerable Populations/psychologyABSTRACT
The dissociation between intact priming and reduced explicit memory in aging has been called into question on the basis of limited information that suggests that priming measures are less reliable than explicit memory measures. No aging study to date, however, has offered a comprehensive examination of the reliability of these measures. Age-related performance and test-retest stability coefficients for multiple priming and explicit memory tasks were compared. Age effects were found on some tasks but not others, and stability was not related to task performance. Stability was similar for implicit versus explicit task instructions, younger versus older persons, and studied versus unstudied items. Results indicate that dissociations between priming and explicit memory performances cannot be accounted for by differential reliability of the measures.
