Families' Experiences of Life in the Year after a Child's Critical Illness: Navigating the Road to a "New Normal".
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ABSTRACT:
SUBMITTER: Atkins EK
PROVIDER: S-EPMC7360390 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Road traffic accident (RTA) victims also suffer from different types of injuries and disabilities, which can affect their quality of life. They usually face with various physical, mental, and social problems. Most traffic accident victims had difficulty to return to normal life.This study aimed to understand the experiences of return to normal life in RTA victims.This qualitative study with content analysis approach was conducted on 18 Iranian patients with disability in the upper or lower limbs caused by traffic accidents, who had passed a time between 3 months till 2 years. A purposeful sampling method was applied until reaching data saturation. Data were collected using semi-structured interviews. Afterwards, the gathered data were analyzed through conventional content analysis.By analyzing 498 primary codes, four main categories, including supportive needs, adaptation to the new situation, seeking information, and transition from functional limitation, were extracted from traffic accident victims' experiences of reintegration to normal life.The results of this study may help policy-makers to take steps toward health promotion and recovery of RTA victims. Considering the results of this study, it is a need for further research to investigate RTAs victims' needs for reintegration to home and community. Access to training and supportive facilities like strong therapeutic, nursing and social support, and the possibility to participate in self-care activities is essential for reintegration to community in RTA victims.
| S-EPMC4893411 | biostudies-other
Project description:BackgroundPediatric critical care is often accompanied by a variety of functional impairments. Preliminary evidence suggests children's participation in home activities has a slow trajectory post-pediatric intensive care unit (PICU) discharge, however, additional and more granular knowledge on specific problematic activities is needed to inform patient-centric rehabilitative care. The objectives of this study are to identify common home activities in which caregivers' report dissatisfaction and to determine predictors of caregivers' dissatisfaction with their child's participation in home activities post-PICU discharge.MethodsSecondary analyses of data from a prospective cohort study, the Wee-Cover study, using a subsample of caregivers (N = 170) of children 1-17 years, admitted to a PICU ≥48 h with data on our primary outcome measure from at least one time point. Data were gathered at enrollment and at 3 and 6 months post-PICU discharge. Caregivers reported on their dissatisfaction with their child's participation in home activities via the Participation and Environment Measure. Common activities were identified by plotting caregiver dissatisfaction for each activity pre-and post-PICU, reporting activities in which ≥50% of caregivers reported dissatisfaction with post-PICU, and assessing for significantly different dissatisfaction levels between time-points for each activity. Predictors of caregiver dissatisfaction were assessed using Poisson generalized estimated equation models.ResultsThere was variability in reported dissatisfaction across all activities; ≥50% of caregivers reported dissatisfaction with five activities, including getting clean, personal care management, and mealtime for younger children and household chores and homework for school-aged children and youth. Four activities had significantly higher caregiver dissatisfaction post-PICU: sleep (children < 5 years), homework, indoor play and games, and computer/video games (children ≥5 years). Home environmental support and the interaction of having participation-focused strategies with receiving PICU-based rehabilitation services were negatively associated with caregiver dissatisfaction. Increased caregiver stress and functional performance were associated with increased dissatisfaction.ConclusionsIndividualized PICU-based rehabilitation services to determine family priorities and develop participation-focused strategies, specifically those increasing environmental supports within the home, may ease the family's transition home post-PICU.Trial registrationClinicalTrials.gov Identifier NCT02148081 05/28/2014.
| S-EPMC7466418 | biostudies-literature
Project description:ObjectiveTo explore the experiences of children and families after a child's traumatic injury (Injury Severity Score >8).DesignQualitative interview study.SettingTwo children's major trauma centres in England.Participants32 participants: 13 children with traumatic injuries, their parents/guardians (n = 14) and five parents whose injured child did not participate.MethodsSemi-structured interviews exploring the emotional, social, practical and physical impacts of children's injuries, analysed by thematic analysis.ResultsInterviews were conducted a median of 8.5 months (IQR 9.3) post-injury. Injuries affected the head, chest, abdomen, spine, limbs or multiple body parts. Injured children struggled with changes to their appearance, physical activity restrictions and late onset physical symptoms, which developed after hospital discharge when activity levels increased. Social participation was affected by activity restrictions, concerns about their appearance and interruptions to friendships. Psychological impacts, particularly post-traumatic stress type symptoms often affected both children and parents. Parents' responsibilities suddenly increased, which affected family relationships and roles, their ability to work and carry out daily tasks. Rapid hospital discharge was wanted, but participants often felt vulnerable on return home. They valued continued contact with a healthcare professional and practical supports from family and friends, which enabled resumption of their usual lives.ConclusionsInjured children experience changes to their appearance, friendships, physical activity levels and develop new physical and mental health symptoms after hospital discharge. Such challenges can be addressed by the provision of advice about potential symptoms, alternative activities during recovery, strategies to build resilience and how to access services after hospital discharge.
| S-EPMC8027929 | biostudies-literature
Project description:OBJECTIVE:To investigate: (1) patient and family experiences with healthcare and the intensive care unit (ICU); (2) experiences during their critical illness; (3) communication and decision making during critical illness; (4) feelings about the ICU experience; (5) impact of the critical illness on their lives; and (6) concerns about their future after the ICU. DESIGN:Four semistructured focus group interviews with former ICU patients and family members. SETTINGS:Multicultural community group and local hospitals containing medical/surgical ICUs. PARTICIPANTS:Patients and family who experienced a critical illness within the previous 10 years. INTERVENTIONS:None. MEASUREMENTS AND MAIN RESULTS:Four separate focus groups each lasting a maximum of 150?min and consisting of a total of 21 participants were held. Focus groups were conducted using a semistructured script including six topics relating to the experience of critical illness that facilitated deduction and the sorting of data by thematic analysis into five predominant themes. The five main themes that emerged from the data were: (1) personalised stories of the critical illness; (2) communication and shared decision making, (3) adjustment to life after critical illness, (4) trust towards clinical team and relevance of cultural beliefs and (5) end-of-life decision making. Across themes, we observed a misalignment between the medical system and patient and family values and priorities. CONCLUSIONS:The experience of critical illness of a diverse group of patients and families can remain vivid for years after ICU discharge. The identified themes reflect the strength of memory of such pivotal experiences and the importance of a narrative around those experiences. Clinicians need to be aware of the lasting effects of critical illness has on patients and families.
| S-EPMC7245383 | biostudies-literature
Project description:IntroductionCritical illness and admission to an intensive care unit (ICU) can affect patients for months or years following discharge as many suffer from cognitive impairment. Long-term cognitive impairment affects patients' quality of life and ability to adapt to everyday life. Exploring their experiences on how and which cognitive impairments are affecting their everyday lives facilitates planning of relevant research on interventions that may serve to alleviate the burden of post-ICU cognitive impairment. The objective of this scoping review is to map the existing research on patients' experiences of cognitive impairment following critical illness.Methods and analysisThe methodology will follow the Joanna Briggs Institute guidelines for scoping reviews. The databases MEDLINE, CINAHL, PsycINFO and Embase will be searched to identify studies appropriate for inclusion. Any peer-reviewed original studies meeting the inclusion criteria and include statements from adult patients about how they experience cognitive impairment following critical illness and ICU admission will be considered. Studies published in English and Scandinavian languages will be included, with no further geographical or cultural limitations. The included studies will be screened by two independent researchers using a standardised data extraction tool and the Mixed Methods Appraisal Tool will be used for critical appraisal. The results will be presented in a tabular form, and data will be supported by narrative descriptions or a narrative summary.Ethics and disseminationSince the scoping review methodology aims at synthetising existing research on patients' experiences of cognitive impairment following critical illness, the scoping review does not require ethical approval. The results will be disseminated though a peer-reviewed publication in a scientific journal.
| S-EPMC9014050 | biostudies-literature
Project description:OBJECTIVES:To determine the occurrence rate of unplanned readmissions to PICUs within 1 year and examine risk factors associated with repeated readmission. DESIGN:Retrospective cohort analysis. SETTING:Seventy-six North American PICUs that participated in the Virtual Pediatric Systems, LLC (VPS, LLC, Los Angeles, CA). PATIENTS:Ninety-three thousand three hundred seventy-nine PICU patients discharged between 2009 and 2010. INTERVENTIONS:None. MEASUREMENTS AND MAIN RESULTS:Index admissions and unplanned readmissions were characterized and their outcomes compared. Time-to-event analyses were performed to examine factors associated with readmission within 1 year. Eleven percent (10,233) of patients had 15,625 unplanned readmissions within 1 year to the same PICU; 3.4% had two or more readmissions. Readmissions had significantly higher PICU mortality and longer PICU length of stay, compared with index admissions (4.0% vs 2.5% and 2.5 vs 1.6 d; all p < 0.001). Median time to readmission was 30 days for all readmissions, 3.5 days for readmissions during the same hospitalization, and 66 days for different hospitalizations. Having more complex chronic conditions was associated with earlier readmission (adjusted hazard ratio, 2.9 for one complex chronic condition; hazard ratio, 4.8 for two complex chronic conditions; hazard ratio, 9.6 for three or more complex chronic conditions; all p < 0.001 compared no complex chronic condition). Most specific complex chronic condition conferred a greater risk of readmission, and some had considerably higher risk than others. CONCLUSIONS:Unplanned readmissions occurred in a sizable minority of PICU patients. Patients with complex chronic conditions and particular conditions were at much higher risk for readmission.
| S-EPMC5541898 | biostudies-literature
Project description:BackgroundParents are integral in the treatment of pediatric eating disorders. The current study was conducted to further understand the barriers and facilitators that parents experience in accessing specialized, tertiary level eating disorder treatment for children and adolescents. The goals of the study were to understand the processes leading to diagnosis and treatment, perceived barriers and facilitators to accessing care, and parents' experiences over the course of their child's eating disorder treatment.MethodsTen parents whose children were admitted to a Canadian tertiary level specialized pediatric eating disorders program took part in an exit interview upon their child's completion of treatment in the program. In-depth semi-structured interviews were combined with a visual timeline. Interpretive induction was performed to generate high-level concepts that emerged from the interviews.ResultsFive high-level concepts were identified: (1) delays in identifying eating disorder symptoms, (2) challenges in accessing eating disorder services, (3) the right treatment at the right time, (4) emotional impact on parents, and (5) parental expertise and involvement.ConclusionsSeveral barriers were identified by parents that interfered with treatment, including system-related challenges when accessing specialized eating disorder treatment, concerns about a lack of appropriate mental health support for their child, and difficulties with transitioning between community and tertiary level care. Negative emotions, including guilt and self-blame, were common early in the treatment journey. Themes of parental involvement throughout treatment, and parents taking charge of their child's recovery, emerged across interviews. The results of this study suggest the importance of early identification of eating disorder symptoms, facilitating smoother transitions between levels of care (e.g., community services and hospital-based eating disorder care), and improving clinical decision-making to ensure children and adolescents with eating disorders receive the most appropriate treatment based on their clinical presentation.
| S-EPMC8314586 | biostudies-literature
Project description:The reactivity of the cobalt-carbon bond in cobalamins is the key to their chemical versatility, supporting both methyl transfer and isomerization reactions. During evolution of higher eukaryotes that utilize vitamin B12, the high reactivity of the cofactor coupled with its low abundance pressured development of an efficient system for uptake, assimilation, and delivery of the cofactor to client B12-dependent enzymes. Although most proteins suspected to be involved in B12 trafficking were discovered by 2009, the recent identification of a new protein reveals that the quest for elucidating the intracellular B12 highway is still far from complete. Herein, we review the biochemistry of cobalamin trafficking.
| S-EPMC3650358 | biostudies-literature
Project description:RationaleFactors associated with one-year mortality after recovery from critical illness are not well understood. Clinicians generally lack information regarding post-hospital discharge outcomes of patients from the intensive care unit, which may be important when counseling patients and families.ObjectiveWe sought to determine which factors among patients who survived for at least 30 days post-ICU admission are associated with one-year mortality.MethodsSingle-center, longitudinal retrospective cohort study of all ICU patients admitted to a tertiary-care academic medical center from 2001-2012 who survived ≥30 days from ICU admission. Cox's proportional hazards model was used to identify the variables that are associated with one-year mortality. The primary outcome was one-year mortality.Results32,420 patients met the inclusion criteria and were included in the study. Among patients who survived to ≥30 days, 28,583 (88.2%) survived for greater than one year, whereas 3,837 (11.8%) did not. Variables associated with decreased one-year survival include: increased age, malignancy, number of hospital admissions within the prior year, duration of mechanical ventilation and vasoactive agent use, sepsis, history of congestive heart failure, end-stage renal disease, cirrhosis, chronic obstructive pulmonary disease, and the need for renal replacement therapy. Numerous effect modifications between these factors were found.ConclusionAmong survivors of critical illness, a significant number survive less than one year. More research is needed to help clinicians accurately identify those patients who, despite surviving their acute illness, are likely to suffer one-year mortality, and thereby to improve the quality of the decisions and care that impact this outcome.
| S-EPMC5947984 | biostudies-literature
Project description:BackgroundDespite increased emphasis on providing higher-quality patient- and family-centered care in the intensive care unit (ICU), there are no widely accepted definitions of such care in the ICU.ObjectivesTo determine (1) aspects of care that patients and families valued during their ICU encounter, (2) outcomes that patients and families prioritized after hospital discharge, and (3) outcomes perceived as equivalent to or worse than death.MethodsSemistructured interviews (n = 49) of former patients of an urban, academic medical ICU and their family members. Two investigators reviewed all transcripts line by line to identify key concepts. Codes were created and defined in a codebook with decision rules for their application and were analyzed using qualitative content analysis.ResultsSalient themes were identified and grouped into 2 major categories: (1) processes of care within the ICU- communication, patient comfort, and a sense that the medical team was "doing everything" (ie, providing exhaustive medical care) and (2) patient and surrogate outcomes after the ICU-survival, quality of life, physical function, and cognitive function. Several outcomes were deemed worse than death: severe cognitive/physical disability, dependence on medical machinery/equipment, and severe/constant pain.ConclusionAlthough survival was important, most participants qualified this preference. Simple measures of mortality rates may not represent patient- or family-centered outcomes in evaluations of ICU-based interventions, and new measures that incorporate functional outcomes and patients' and family members' views of life quality are necessary to promote patient-centered, evidence-based care.
| S-EPMC8101225 | biostudies-literature