Life-sustaining Technology Research Articles

Death acceptance among Lodha older adults: their perceptions of ‘good death’ during the COVID-19 pandemic

ABSTRACT A ‘good death’, one that is natural and involves lesser suffering and distress, is elusive in the present time. Indiscriminate uses of life-sustaining medical technologies in present times only lead older people and their families to frantically search for ‘good death’. On the other hand, there is little information on ageing and dying in folk and indigenous societies. In response to the huge information deficit, this article attempts to explore perceptions about death in old-age among Lodhas, a Mundari-speaking tribal community of eastern India. Interacting with only living 15 elderly members in a hamlet let us know their beliefs like, 1. Death being inevitable, they do not seek medical interventions to postpone it; 2. Close connection with nature till death brings peace; 3. No compromise with personal autonomy; and 4. Filial piety in moments of dying. The study theorises their indigenous beliefs are keys to ageing and dying well in the Lodha community. Hopefully, the insights from the ethnic group will be a lesson for modern societies to overcome death anxiety in old-age.

Trajectories in Intensity of Medical Interventions at the End of Life: Clustering Analysis in a Pediatric, Single-Center Retrospective Cohort, 2013-2021.

Pediatric deaths often occur within hospitals and involve balancing aggressive treatment with minimization of suffering. This study first investigated associations between clinical/demographic features and the level of intensity of various therapies these patients undergo at the end of life (EOL). Second, the work used these data to develop a new, broader spectrum for classifying pediatric EOL trajectories. Retrospective, single-center study, 2013-2021. Four hundred sixty-one bed tertiary, stand-alone children's hospital with 112 ICU beds. Patients of age 0-26 years old at the time of death. None. Of 1111 included patients, 85.7% died in-hospital. Patients who died outside the hospital were older. Among the 952 in-hospital deaths, most occurred in ICUs (89.5%). Clustering analysis was used to distinguish EOL trajectories based on the presence of intensive therapies and/or an active resuscitation attempt at the EOL. We identified five simplified categories: 1) death during active resuscitation, 2) controlled withdrawal of life-sustaining technology, 3) natural progression to death despite maximal therapy, 4) discontinuation of nonsustaining therapies, and 5) withholding/noninitiation of future therapies. Patients with recent surgical procedures, a history of organ transplantation, or admission to the Cardiovascular ICU had more intense therapies at EOL than those who received palliative care consultations, had known genetic conditions, or were of older age. In this retrospective study of pediatric EOL trajectories based on the intensity of technology and/or resuscitation discontinued at the EOL, we have identified associations between these trajectories and patient characteristics. Further research is needed to investigate the impact of these trajectories on families, patients, and healthcare providers.

Palliative Care in the Neonatal Intensive Care Unit: An Evolutionary Concept Analysis of Uncertainty in Anticipated Loss.

Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate concepts no longer have the descriptive power to clarify new phenomena endured by parents in the changing neonatal landscape. A current concept analysis examining uncertainty in anticipated loss is necessary to generate knowledge concurrently with deviations observed in the neonatal intensive care unit. To explore the concept of uncertainty in anticipated loss among parents of infants with genetic disorders. Following Rodgers' method of concept analysis, the concept was named, surrogate terms, antecedents, attributes, and consequences were identified from the literature, and a model case was constructed. The databases CINAHL, PubMed, and PsycINFO were used to conduct the literature search. Fifteen articles provided the data for this analysis. Uncertainty in anticipated loss is a complex, nonlinear, and multifaceted experience anteceded by an ultimately terminal diagnosis, an ambiguous prognosis, and a lack of clear knowledge to guide treatment. Its attributes include a loss of control, assumptive world remodeling, role/identity confusion, and prolonged emotional complexity that consequently leads to a cyclical pattern of positive and negative outcomes. This newly defined concept empowers neonatal nurses to provide care that includes a holistic understanding of the experience of uncertainty in anticipated loss . Nurses are ideally positioned and have the responsibility to utilize this concept to become better advocates for infants and facilitators of parental wellness.

The factorial survey as an approach to investigate clinical decision-making: examining influences on a clinician's decision to initiate life-sustaining clinical technology for a child with spinal muscular atrophy type 1

BackgroundSpinal Muscular Atrophy (SMA) type 1 is a debilitating condition with a poor prognosis, though therapeutic advances are promising. Long-term ventilation is a common management strategy as respiratory function deteriorates. Without consensus on best practice respiratory management, the decision to initiate invasive LTV (I-LTV) for this group of young children involves many ethical considerations. Understanding the main influencing factors on a clinician's likelihood to initiative I-LTV for a child with chronic critical illness is important to maintain transparency and trust with the family during this challenging time.MethodsA factorial survey was used to identify the factors that influence a clinician to support initiation of I-LTV for children with SMA type 1. Factorial survey content was based on literature and evidence-based practice and the content was subject to extensive pretesting and pilot testing. An anonymous survey was disseminated (Oct 2021–Jan 2022), via eight international professional organisations, to clinicians with experience caring for children at the time of initiation of I-LTV.Results251 participants answered 514 vignettes on SMA type 1. The greatest influencing factor on clinician's likelihood to initiate I-LTV was parental agreement with the need to initiate I-LTV. Additional qualitative comments from participants support this finding. Clinicians also highlighted the important role of innovative therapies as well as the availability of supports for families when considering initiation however these findings were context based.ConclusionsThe factorial survey approach provides a valuable way of identifying influencers on decision-making in sensitive situations. The findings demonstrate the acceptance of the centrality of parental influence in decisions on care delivery. Effective communication with the child's family is key to ensuring shared understanding and agreement of goals of care. More international research is needed on the long-term effects of novel treatments, as well as impact on quality of life and influence of geographical location, to inform decision-making.

56 Survival and Long-term Outcomes of Children who Survived after End-of-Life Decisions in the NICU

Abstract Background The majority of deaths in neonatal intensive care units (NICU) follow end-of-life decision-making. Most discussions regarding the withdrawal or withholding of life-sustaining interventions (WWLST) occur when infants are dependent on life-sustaining technology (LST) to stay alive. These children are often expected to die within a relatively short time if LST is withheld or withdrawn. The objective of this study was to investigate long-term outcomes of babies who survive despite WWLST decision-making. Objectives The goals of this study were to: 1) examine the prevalence of WWLST discussions with parents in a level 3 NICU; 2) investigate decisions associated with WWLST discussions; and 3) examine survival and long-term outcomes of children when life-saving interventions (LSI) are withheld or withdrawn. Design/Methods In 2020 and 2021, the charts of all 6 years of level 3 unit NICU admissions were reviewed for presence of WWLST discussions or decisions, as well as the functional long-term outcome at 2 years for all children who survived. The decisions taken at the time of the WWLST discussions were categorized into 4 groups, using a modification of the Verhagen classification. Results WWLST discussions occurred for 266 of 5251 infants admitted to the NICU: 151 were term and 115 were preterm infants. In more than two-thirds of these discussions, themes related to concerns about the future and were mainly based on severe neurological prognosis. Among all discussions, 164 led to a WWLST decision, 130 of which were followed by the infant’s death. Of 34 children who survived to discharge despite WWLST, 20 were preterms and 14 were males. Among these, 10 died before 2 years of age and 11 require frequent medical follow-up. Major functional limitations were common among survivors, but eight were classified as functionally normal or as having mild to moderate functional limitations. Conclusion Many discussions about WWLST do not result in a decision to withhold or withdraw life-saving interventions. When a WWLST decision is taken, survival may occur, which is usually associated with poor long-term outcomes, but this trajectory is not universal. Discussions about WWLST should recognize all possibilities.

Technology solutionism in paediatric intensive care: clinicians’ perspectives of bioethical considerations

BackgroundThe use of long-term life-sustaining technology for children improves survival rates in paediatric intensive care units (PICUs), but it may also increase long-term morbidity. One example of this is children who are dependent on invasive long-term ventilation. Clinicians caring for these children navigate an increasing array of ethical complexities. This study looks at the meaning clinicians give to the bioethical considerations associated with the availability of increasingly sophisticated technology.MethodsA hermeneutic phenomenological exploration of the experiences of clinicians in deciding whether to initiate invasive long-term ventilation in children took place, via unstructured interviews. Data were analysed to gain insight into the lived experiences of clinicians. Participants were from PICUs, or closely allied to the care of children in PICUs, in four countries.ResultsThree themes developed from the data that portray the experiences of the clinicians: forming and managing relationships with parents and other clinicians considering, or using, life sustaining technology; the responsibility for moral and professional integrity in the use of technology; and keeping up with technological developments, and the resulting ethical and moral considerations.DiscussionThere are many benefits of the availability of long-term life-sustaining technology for a child, however, clinicians must also consider increasingly complex ethical dilemmas. Bioethical norms are adapting to aid clinicians, but challenges remain.ConclusionDuring a time of technological solutionism, more needs to be understood about the influences on the initiation of invasive long-term ventilation for a child. Further research to better understand how clinicians, and bioethics services, support care delivery may positively impact this arena of health care.

Clinical Protocol for Left Ventricular Assist Device Deactivation at End of Life.

As patients live longer with left ventricular assist device (LVAD) support, many will either suffer an acute event or develop a gradual, progressive disease that results in a terminal prognosis. At the end-of-life, patients, and more often, their families, will be faced with the decision to deactivate the LVAD to allow natural death. The process of LVAD deactivation carries some distinct features that distinguish it from withdrawal of other forms of life-sustaining medical technology: multidisciplinary collaboration is paramount; prognosis after deactivation is short, typically minutes-hours; and premedication doses of symptom-focused medications are typically higher than other situations involving withdrawal of life-sustaining medical technologies given the precipitous decline in cardiac output following LVAD deactivation. In this Case Discussion, we introduce the complexity of planned in-hospital LVAD deactivation through a clinical case, share our detailed institutional checklist and order set for LVAD deactivation, and broach multidisciplinary clinical protocol development processes.

An Assessment Of The Ethical And Legal Dilemma In The Practice Of Anaesthesiology: The Nigerian Perspective

The practice of medicine intersects with the legal system in two important ways. The ethical code establishes the framework of permissible conduct, through regulation, while the legal system provides patients and other entities recourse when these regulations are breached. Anaesthesia is a branch of Medicine and Anaesthesiologists care for patients at the extremes of health and illness, frequently employing life-sustaining technologies and procedures to restore health. Patients have widely recognised right to reject life-sustaining procedures that may be in conflict with the tradition of physician paternalism and authoritarianism derived from virtue-based ethics. This naturally leads to high expectations among the general public from the Anaesthesiologists. In the past, patients used to subject themselves to surgery after signing a simple willingness form, but in the present scenario, if any catastrophe occurs, it grabs news headlines, negligence is suspected by the general public. There has been a rising trend in medical negligence cases that the services provided by an anaesthesiologist come under the apprehension standard of care, protocols by which anaesthesiologists should abide to avoid legal consequences. This paper examines emerging ethical issues since the establishment of anaesthesia as a branch of medicine. The paper adopts the doctrinal methodology of research by examining primary and secondary sources related to the discourse. The paper further recommends adequate medical information by way of educating patients on their rights before any medical procedure among others.

A Case of Tracheostomy Decannulation During Withdrawal of Life-Sustaining Technologies (CS308)

A Case of Tracheostomy Decannulation During Withdrawal of Life-Sustaining Technologies (CS308)

“More life and more days”—patient and care characteristics in a specialized acute pediatric palliative care inpatient unit

Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing patient and care characteristics on our PPCU to learn about the complexity and relevance of inpatient PPC. A retrospective chart analysis was performed on the 8-bed PPCU of the Center for Pediatric Palliative Care of the Munich University Hospital, including demographic, clinical, and treatment characteristics (487 consecutive cases; 201 individual patients; 2016–2020). Data were analyzed descriptively; the chi-square test was used for comparisons. Patients’ age (1–35.5 years, median: 4.8 years) and length of stay (1–186 days, median 11 days) varied widely. Thirty-eight percent of patients were admitted repeatedly (range 2–20 times). Most patients suffered from neurological diseases (38%) or congenital abnormalities (34%); oncological diseases were rare (7%). Patients’ predominant acute symptoms were dyspnea (61%), pain (54%), and gastrointestinal symptoms (46%). Twenty percent of patients suffered from > 6 acute symptoms, 30% had respiratory support incl. invasive ventilation, 71% had a feeding tube, and 40% had full resuscitation code. In 78% of cases, patients were discharged home; 11% died on the unit.Conclusion: This study shows the heterogeneity, high symptom burden, and medical complexity of the patients on the PPCU. The high dependency on life-sustaining medical technology points to the parallelism of life-prolonging and palliative treatments that is typical for PPC. Specialized PPCUs need to offer care at the intermediate care level in order to respond to the needs of patients and families.What is Known:• Pediatric patients in outpatient PPC or hospices present with a variety of clinical syndromes and different levels of complexity and care intensity.• There are many children with life-limiting conditions (LLC) in hospitals, but specialized PPC hospital units for these patients are rare and poorly described.What is New:• Patients on a specialized PPC hospital unit show a high symptom burden and a high level of medical complexity, including dependency on medical technology and frequent full resuscitation code.• The PPC unit is mainly a place for pain and symptom management as well as crisis intervention, and needs to be able to offer treatment at the intermediate care level.

Discussion Guide for the Brogan Article.

Discussion Guide for the Brogan Article.

Characterization of sleep-disordered breathing in children with Duchenne muscular dystrophy by the American Academy of Sleep Medicine criteria vs disease-specific criteria: what are the differences?

Individuals with Duchenne muscular dystrophy (DMD) frequently develop sleep-disordered breathing. Noninvasive ventilation is often prescribed for sleep-disordered breathing treatment based on the American Academy of Sleep Medicine (AASM) criteria. In 2018, DMD disease-specific criteria for sleep-disordered breathing were established. Our study aimed to examine the clinical interpretation differences using these different criteria. We performed a multicenter, retrospective chart review of children with DMD followed at The Hospital for Sick Children, Toronto, Canada, and Rady Children's Hospital, San Diego, California, who underwent polysomnography from August 1, 2012, to February 29, 2020. Baseline characteristics and polysomnography data were summarized using descriptive statistics. Agreement for the diagnosis of sleep-disordered breathing evaluated by kappa statistics and sensitivity/specificity analysis was assessed. One hundred five male children with DMD (mean ± SD age: 12.1 ± 3.8 years; body mass index z score: 0.2 ± 2.3) were included. The proportions of children with DMD that met at least 1 AASM criterion and at least 1 DMD criterion were 45.7% and 67.6%, respectively. We found that 32.4% of children met neither AASM nor DMD criteria. Overall agreement between AASM and DMD criteria was moderate (k = 0.57). There was almost perfect agreement in sleep apnea diagnosis (k = 0.90); however, there was only slight agreement in hypoventilation diagnosis (k = 0.12) between AASM and DMD criteria. There were more children with DMD diagnosed with nocturnal hypoventilation and prescribed noninvasive ventilation using DMD criteria compared with AASM criteria. Future studies should address whether the prescription of noninvasive ventilation for children with DMD based on both criteria is associated with different clinical outcomes. Hurvitz MS, Sunkonkit K, Massicotte C, Li R, Bhattacharjee R, Amin R. Characterization of sleep-disordered breathing in children with Duchenne muscular dystrophy by the American Academy of Sleep Medicine criteria vs disease-specific criteria: what are the differences? J Clin Sleep Med. 2022;18(2):609-615.

Assessment of a Situation Awareness Quality Improvement Intervention to Reduce Cardiac Arrests in the PICU.

To use improved situation awareness to decrease cardiopulmonary resuscitation events by 25% over 18 months and demonstrate process and outcome sustainability. Structured quality improvement initiative. Single-center, 35-bed quaternary-care PICU. All patients admitted to the PICU from February 1, 2017, to December 31, 2020. Interventions targeted situation awareness and included bid safety huddles, bedside mitigation signs and huddles, smaller pod-based huddles, and an automated clinical decision support tool to identify high-risk patients. The primary outcome metric, cardiopulmonary resuscitation event rate per 1,000 patient-days, decreased from a baseline of 3.1-1.5 cardiopulmonary resuscitation events per 1,000 patient-days or by 52%. The secondary outcome metric, mortality rate, decreased from a baseline of 6.6 deaths per 1,000 patient-days to 3.6 deaths per 1,000 patient-days. Process metrics included percent of clinical deterioration events predicted, which increased from 40% to 67%, and percent of high-risk patients with shared situation awareness, which increased from 43% to 71%. Balancing metrics included time spent in daily safety huddle, median 0.4 minutes per patient (interquartile range, 0.3-0.5), and a number needed to alert of 16 (95% CI, 14-25). Neither unit acuity as measured by Pediatric Risk of Mortality III scores nor the percent of deaths in patients with do-not-attempt resuscitation orders or electing withdrawal of life-sustaining technologies changed over time. Interprofessional teams using shared situation awareness may reduce cardiopulmonary resuscitation events and, thereby, improve outcomes.

Initiating technology dependence to sustain a child’s life: a systematic review of reasons

BackgroundDecision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and...

Hypophosphatasia Misdiagnosed as Osteoporosis in a Young Girl

Introduction: Hypophosphatasia (HPP) is a rare inherited disease of mineral metabolism characterized by low activity of the tissue-nonspecific isoenzyme of alkaline phosphatase (TNALP), which causes an inability to liberate inorganic phosphate for hydroxyapatite crystal propagation as well as toxic accumulation of inorganic pyrophosphate, pyridoxal-5’-phosphate and urinary phosphoethanolamine. It has a prevalence of 1/100,000 to 1/900,000, although milder forms have an estimated prevalence of 1/6,370. Variable mutations in TNALP cause clinical expressions ranging from a severe perinatal form, which is often fatal after birth from pulmonary complications, to an infantile form, which can cause vitamin B6-responsive seizures, to an asymptomatic adult form. Case: A 27-year-old, ventilator-dependent female with osteoporosis, hypothyroidism, cerebral palsy with previous spinal fusion, seizure disorder and nephrocalcinosis presented with surgical site infection from a right femur ORIF she underwent a month ago. She had a history of microfractures and low-impact fractures of both femurs requiring several surgeries. Osteoporosis was diagnosed at age 5 and she had been on Fosamax ever since. She did not meet any developmental milestones as a baby and never reached menarche. Various diagnoses by multiple specialists did not fully explain her clinical presentation. Her medications included alendronate 5 mg, calcium carbonate 600 mg, ergocalciferol 400 U and levothyroxine 50 mcg. Physical exam showed poor dentition, a misshapen skull and bowed legs with contractures of her extremities. Her labs revealed Ca 9.1 mg/dL (8.4–10.2 mg/dL), albumin 3.2 gm/dL (3.5–5.2 gm/dL), phosphorus 5.1 mg/dL (2.5–4.5 mg/dL), alkaline phosphatase 32 U/L (35–105 U/L), PTH 28 pg/mL (15–65 pg/mL), vitamin D 33.5 ng/mL (30–100 ng/mL), C-telopeptide 509 pg/mL (34–635 pg/mL). A right knee X-Ray reported diffusely gracile and demineralized bones with muscular atrophy. She recently transitioned care from a pediatric endocrinologist to an adult endocrinologist, who tested her positive for heterozygous ALPL pathogenic variant hypophosphatasia and was considering her for asfotase alfa enzyme replacement therapy. Discussion: Our patient had infantile HPP, but due to misdiagnosis as osteoporosis, she was inappropriately treated with a bisphosphate for over 20 years. Treatment of HPP had been supportive until the approval of asfotase alfa (Strensiq) in October 2015. It is a bone-targeted human recombinant enzyme replacement therapy approved for infantile- and juvenile-onset HPP and has been shown to decrease mortality from 73% to 16% at age 5. With improvement in life-sustaining technology, more HPP patients are able to survive into adulthood. Awareness of the complex and polymorphic presentation of HPP by adult endocrinologists is paramount for accurate diagnosis, thus avoiding inappropriate treatments.

Parents of Children With Medical Complexity Are Essential Health Care Personnel

* Abbreviations: CDC — : Centers for Disease Control and Prevention CMC — : children with medical complexity COVID-19 — : coronavirus disease 2019 The coronavirus disease 2019 (COVID-19) pandemic has created a national and global crisis. The United States has invested tremendous effort and resources to fast track severe acute respiratory syndrome coronavirus 2 vaccines from conception to market in 1 year, an amazing scientific achievement. Public health experts are now leading the distribution of COVID-19 vaccines. The Centers for Disease Control and Prevention (CDC) recommends that health care personnel be offered COVID-19 vaccination during the early phases of distribution. Health care personnel are broadly defined and include emergency medical service personnel, nurses and nursing assistants, physicians, technicians, therapists, dentists, dental hygienists and assistants, phlebotomists, pharmacists, students and trainees, contractual staff, dietary and food services staff, environmental services staff, and administrative staff. We strongly recommend that parents and family caregivers (collectively referred to as parents in this article) of children with medical complexity (CMC) be included in the early phases of vaccine distribution because they serve as essential frontline health care personnel. CMC have significant chronic health conditions that involve multiple organ systems, substantial health service needs, major functional limitations, and high health resource use. They have high levels of medical fragility, technology dependencies (tracheostomies, ventilators, feeding tubes, intrathecal baclofen infusion systems, and others), and psychosocial complexities. We identify CMC as those who have ≥3 organ systems affected (≥3 Feudtner … Address correspondence to Nancy A. Murphy, MD, FAAP, FAAPMR, Division of Pediatric Physical Medicine & Rehabilitation, Department of Pediatrics, School of Medicine, University of Utah, 81 North Mario Capecchi Dr, Salt Lake City, UT 84113. E-mail: nancy.murphy{at}hsc.utah.edu

Children with medical complexity: A concept analysis.

The aim of this paper is to conduct a concept analysis on the term, "children with medical complexity." Children with medical complexity (CMC) describes pediatric patients with chronic, sustained acuity; however, there is a lack of consensus in the literature regarding its exact meaning, characteristics, and implications. This analysis relied upon the framework described by Walker and Avant. The CINAHL, MEDLINE, and PubMed databases were queried from April 2020 to December 2020 with an initial search of the literature for the keyword, "children with medical complexity" and other associated terms, such as "pediatric medical complexity" and "nursing care of children with medical complexity." This analysis will explore the concept of CMC and its significance, attributes, antecedents, and consequences. This investigation revealed that CMC are a growing population of pediatric patients who have one or more complex chronic conditions that affect multiple body systems, experience functional limitations, require extensive care coordination from multiple providers, and are dependent upon life-sustaining medical technology. The findings can serve as a foundation for future work advancing the understanding of the topic of CMC.

Approaches to the initiation of life-sustaining technology in children: A scoping review of changes over time.

Little is understood about the dynamic circumstances within which the initiation of technology dependence takes place in children. The aim of this scoping review was to identify the influences on the initiation of technology dependence and the issues that require further exploration and consideration. Scientific literature that directly or indirectly discussed the initiation of technology dependence in children was identified. A three-stage screening process of title and abstract scrutiny, full-text scanning and in-depth full-text reading resulted in 63 relevant articles from 1133 initially reviewed. These were then subjected to descriptive and thematic analysis. Articles ranged from the 1970s to the present, reflecting the evolution of ethical debates around the approaches to clinical practice and changes in cultural and societal attitudes. Three themes emerged: how technology alters the meaning of futile care, dissonance in the perspectives of decision makers and increasing support for joint decision-making. Only articles in English and predominantly from the clinician's rather than the patient's perspective were included. Societal and cultural factors as well as the structural, financial and cultural environment influence the initiation of technology dependence in children. However, to what extent these overt and implicit influences guide decision-makers in this field remains largely unknown.

The Future of Autoethnography is Black

Research Article| July 27 2020 The Future of Autoethnography is Black Aisha Durham, Aisha Durham Aisha Durham is an associate professor of Communication and 2019 Fulbright-Hays Fellow at the University of South Florida where she uses autoethnography, performance writing, and intersectionality to examine power, identity, and culture. Research about hip-hop feminism is published in her monograph, Home with Hip Hop Feminism: Performances in Communication and Culture, and her edited books, Globalizing Cultural Studies: Ethnographic Interventions in Theory, Method, and Policy and Home Girls Make Some Noise! Hip Hop Feminism Anthology. email: aishadurham@usf.edu Search for other works by this author on: This Site PubMed Google Scholar Marquese McFerguson, Marquese McFerguson Marquese McFerguson is an instructor and recent doctoral graduate in the Department of Communication at the University of South Florida where he examines hip hop and American popular culture from a Black feminist perspective. McFerguson situates his research on Black masculinity in performance studies and critical cultural studies where he employs spoken-word poetry and autoethnography. He is a 2018 recipient of the John T. Warren top paper award sponsored by the NCA Ethnography Division. email: mcferguson@mail.usf.edu Search for other works by this author on: This Site PubMed Google Scholar Sasha Sanders, Sasha Sanders Sasha Sanders is a doctoral candidate in the Department of Communication at the University of South Florida. Her embodied, reflexive approach to exploring media and culture engages Black feminist thought, critical cultural studies, and performance studies in Communication. She is a 2020 recipient of the top paper award sponsored by the Western States Communication Association Performance Studies Division. email: sashasanders@mail.usf.edu Search for other works by this author on: This Site PubMed Google Scholar Anjuliet Woodruffe Anjuliet Woodruffe Anjuliet G. Woodruffe is a doctoral student and graduate teaching assistant in the Department of Communication at the University of South Florida. She is a scholar whose research interests intersect critical race, cultural studies, and women and gender studies. She uses autoethnography, performance studies, and Black feminist thought to analyze representations of transnationals living in the United States. email: awoodruffe@usf.edu Search for other works by this author on: This Site PubMed Google Scholar Journal of Autoethnography (2020) 1 (3): 289–296. https://doi.org/10.1525/joae.2020.1.3.289 Views Icon Views Article contents Figures & tables Video Audio Supplementary Data Peer Review Share Icon Share Facebook Twitter LinkedIn MailTo Tools Icon Tools Get Permissions Cite Icon Cite Search Site Citation Aisha Durham, Marquese McFerguson, Sasha Sanders, Anjuliet Woodruffe; The Future of Autoethnography is Black. Journal of Autoethnography 27 July 2020; 1 (3): 289–296. doi: https://doi.org/10.1525/joae.2020.1.3.289 Download citation file: Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex toolbar search Search Dropdown Menu toolbar search search input Search input auto suggest filter your search All ContentJournal of Autoethnography Search In this piece we present a provocation: that the future of autoethnography is Black. To say “Black” is to consider the possibility that blackness can flesh the felt-sense self as a part of the marked cultural body, can story relational experiences that are inventive and transgressive in its work to democratize forms and humanize the other in cocreated encounters, and can serve as an ontology of resistance in which blackness is harnessed to understand the ubiquitous and generative nature of power—the power to shape identity and experience, and the power employed by the autoethnographer to author or rescript new ones. The ability to conceive creative ways to communicate or convey cultural knowledge across space, body, and time has been a politically imaginative, life-sustaining technology for the African diaspora. Giving a nod to the past-future1 Black-centered narratives that define Afrofuturism,2 our provocation turns this lens toward autoethnography where researchers... You do not currently have access to this content.

Caring for technology-dependent children at home: Problems and solutions identified by mothers

The population of children who are dependent on life-sustaining medical technology in the United States is over 600,000 and continues to grow (U.S. Department of Health and Human Services, 2013). Technology-dependent children have complex, chronic conditions and are dependent on technology such as mechanical ventilation, intravenous nutrition or medication, respiratory support or nutritional support to live (Toly, Musil & Carl, 2012a; Spratling, 2015). Advances in medical technology allow technology-dependent children to live longer. Yet, the care associated with technology significantly impacts individual family members and family life on a daily basis over an indefinite period (Toly et al., 2012a; Caicedo, 2014; Caicedo, 2015). Following the technology-dependent child’s discharge to home, families begin to adjust to the change imposed by caring for a child with these complex care needs by creating a new “normal.” This new normal requires that the parent respond to the situation and adapt their lifestyle to accommodate the healthcare needs of the child (Toly et al., 2012a; Knafl & Deatrick, 2003). This process, referred to as normalization in the literature, begins with accepting the reality of the child’s condition and the potential lifestyle and family changes needed to manage the child’s condition (Deatrick, Knafl, & Murphy-Moore, 1999; Knafl et al., 2013). When normalization is present, parents feel competent in caring for the complex healthcare needs of their children and incorporating the medical management into their family lifestyle and routines (Deatrick et al., 1999; Knafl et al., 2013; Rehm, 2005). These families adopt unique solutions for solving the problems they experience and adjust the environment to provide their children with as many everyday childhood experiences as a typical, normally developing child (Leyenaar, O’Brien, Leslie, Lindenauer, & Mangione-Smith, 2017). Families caring for a technology-dependent child at home must learn to restructure goals based on balancing daily family life with their children’s required medical technology to keep the child stable and healthy while concomitantly maintaining a functioning family (Toly et al., 2012a; Toly, Musil & Carl, 2012b). When parents feel like they fully understand their children’s medical condition, they perceive the condition management as less burdensome and have greater confidence in their parenting skills (Deatrick et al., 1999; Sav et al., 2015; Smith, Cheater, & Bekker, 2015). Other families struggle in their normalization efforts and experience unresolved problems in the day-to-day medical management of their children’s condition (Gonzalez et al., 2017; Knafl & Deatrick, 2003). Parents face challenges in balancing normalcy, family life, household needs, and medical care or treatment needs of their technology-dependent child. The constant change in the care needs of the technology-dependent child and unpredictability of the child’s health status can lead parents to focus on the child’s health schedule and routine to the detriment of other family roles and responsibilities (Leyenaar et al., 2017; Smith et al., 2015). 1.1. Study Purpose The purpose of this study was to identify the day-to-day management problems and solutions employed by mothers of technology-dependent children. At this time, there is little information to assist parent caregivers with the day-to-day management problems they might experience while caring for their technology-dependent children at home (Dybwik, Tollali, Nielsen, & Brinchmann, 2011). Thus, exploring management problems and solutions to these problems is warranted.