Living with a child who has a life limiting condition: The functioning of well‐siblings and parents

2021 ◽  
Author(s):  
Tiina Jaaniste ◽  
Anjali Cuganesan ◽  
Wei Ling ( Audrey) Chin ◽  
Sarah Caellainn Tan ◽  
Sandra Coombs ◽  
...  
Keyword(s):  
Well Siblings ◽  
Limiting Condition

scholarly journals A meta-ethnographic study of fathers’ experiences of caring for a child with a life-limiting illness

2020 ◽  
pp. 026921632097915
Author(s):  
Gianina-Ioana Postavaru ◽  
Helen Swaby ◽  
Rabbi Swaby
Keyword(s):  
English Language ◽  
Psychosocial Interventions ◽  
Healthcare Services ◽  
Ethnographic Study ◽  
Qualitative Studies ◽  
Future Research ◽  
Care Experience ◽  
Care Giving ◽  
Critical Appraisal Skills ◽  
Limiting Condition

Background: There is a growing body of qualitative studies examining parents’ experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers’ needs remains sparse and is often diluted among a predominant ‘mother’s voice’, raising questions about whether practices in clinical settings meet fathers’ needs. Aim: To provide an in-depth assembly of the current state of knowledge around fathers’ experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies. Design: A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers’ experiences of caring. Data sources: Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers’ care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used. Results: Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers’ caregiving journeys. The overarching concepts identified were: the paradox of support, challenges in the caring process, ‘nobody thinks of men’, impact on family life and the fall of the curtain: an irrevocably altered world. These and associated sub-concepts are discussed, with recommendations for future research and practice provided. Conclusion: The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.

scholarly journals Health of mothers of children with a life-limiting condition: a comparative cohort study

2021 ◽  
pp. archdischild-2020-320655
Author(s):  
Lorna K Fraser ◽  
Fliss EM Murtagh ◽  
Jan Aldridge ◽  
Trevor Sheldon ◽  
Simon Gilbody ◽  
...  
Keyword(s):  
Mental Health ◽  
Cohort Study ◽  
Secondary Care ◽  
Incidence Rates ◽  
Health Conditions ◽  
Clinical Practice Research Datalink ◽  
Physical And Mental Health ◽  
Term Condition ◽  
Limiting Condition

ObjectiveThis study aimed to quantify the incidence rates of common mental and physical health conditions in mothers of children with a life-limiting condition.MethodsComparative national longitudinal cohort study using linked primary and secondary care data from the Clinical Practice Research Datalink in England. Maternal–child dyads were identified in these data. Maternal physical and mental health outcomes were identified in the primary and secondary care datasets using previously developed diagnostic coding frameworks. Incidence rates of the outcomes were modelled using Poisson regression, adjusting for deprivation, ethnicity and age and accounting for time at risk.ResultsA total of 35 683 mothers; 8950 had a child with a life-limiting condition, 8868 had a child with a chronic condition and 17 865 had a child with no long-term condition.The adjusted incidence rates of all of the physical and mental health conditions were significantly higher in the mothers of children with a life-limiting condition when compared with those mothers with a child with no long-term condition (eg, depression: incidence rate ratio (IRR) 1.21, 95% CI 1.13 to 1.30; cardiovascular disease: IRR 1.73, 95% CI 1.27 to 2.36; death in mothers: IRR 1.59, 95% CI 1.16 to 2.18).ConclusionThis study clearly demonstrates the higher incidence rates of common and serious physical and mental health problems and death in mothers of children with a life-limiting condition. Further research is required to understand how best to support these mothers, but healthcare providers should consider how they can target this population to provide preventative and treatment services.

scholarly journals Defining end of life in dementia: A systematic review

2021 ◽  
pp. 026921632110254
Author(s):  
Bria Browne ◽  
Nuriye Kupeli ◽  
Kirsten J Moore ◽  
Elizabeth L Sampson ◽  
Nathan Davies
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Functional Decline ◽  
Advanced Stage ◽  
Family Carers ◽  
Inclusion Criteria ◽  
Single Measure ◽  
People With Dementia ◽  
Limiting Condition

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

scholarly journals Predicting Critical Heat Flux With Multiphase CFD: 4 Years in the Making

2017 ◽  
Author(s):  
Emilio Baglietto ◽  
Etienne Demarly ◽  
Ravikishore Kommajosyula
Keyword(s):  
Heat Transfer ◽  
Heat Flux ◽  
Critical Heat Flux ◽  
Bubble Dynamics ◽  
Flow Boiling ◽  
Heated Surface ◽  
Force Balance ◽  
Modeling Framework ◽  
Lift Off ◽  
Limiting Condition

Advancement in the experimental techniques have brought new insights into the microscale boiling phenomena, and provide the base for a new physical interpretation of flow boiling heat transfer. A new modeling framework in Computational Fluid Dynamics has been assembled at MIT, and aims at introducing all necessary mechanisms, and explicitly tracks: (1) the size and dynamics of the bubbles on the surface; (2) the amount of microlayer and dry area under each bubble; (3) the amount of surface area influenced by sliding bubbles; (4) the quenching of the boiling surface following a bubble departure and (5) the statistical bubble interaction on the surface. The preliminary assessment of the new framework is used to further extend the portability of the model through an improved formulation of the force balance models for bubble departure and lift-off. Starting from this improved representation at the wall, the work concentrates on the bubble dynamics and dry spot quantification on the heated surface, which governs the Critical Heat Flux (CHF) limit. A new proposition is brought forward, where Critical Heat Flux is a natural limiting condition for the heat flux partitioning on the boiling surface. The first principle based CHF is qualitatively demonstrated, and has the potential to deliver a radically new simulation technique to support the design of advanced heat transfer systems.

scholarly journals Stable isotope and chemical inhibition analyses suggested the existence of a non-mevalonate-like pathway in the yeast Yarrowia lipolytica

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Sivamoke Dissook ◽  
Tomohisa Kuzuyama ◽  
Yuri Nishimoto ◽  
Shigeru Kitani ◽  
Sastia Putri ◽  
...  
Keyword(s):  
Yarrowia Lipolytica ◽  
Oleaginous Yeast ◽  
Isoprenoid Biosynthesis ◽  
Mep Pathway ◽  
Authentic Standard ◽  
Chemical Inhibition ◽  
Chromatographic Peaks ◽  
Methyl Erythritol Phosphate ◽  
Limiting Condition ◽  
Yeast Yarrowia Lipolytica

AbstractMethyl erythritol phosphate (MEP) is the metabolite found in the MEP pathway for isoprenoid biosynthesis, which is known to be utilized by plants, algae, and bacteria. In this study, an unprecedented observation was found in the oleaginous yeast Yarrowia lipolytica, in which one of the chromatographic peaks was annotated as MEP when cultivated in the nitrogen limiting condition. This finding raised an interesting hypothesis of whether Y. lipolytica utilizes the MEP pathway for isoprenoid biosynthesis or not, because there is no report of yeast harboring the MEP pathway. Three independent approaches were used to investigate the existence of the MEP pathway in Y. lipolytica; the spiking of the authentic standard, the MEP pathway inhibitor, and the 13C labeling incorporation analysis. The study suggested that the mevalonate and MEP pathways co-exist in Y. lipolytica and the nitrogen limiting condition triggers the utilization of the MEP pathway in Y. lipolytica.

scholarly journals Acute Suppurative Thyroiditis in an Intravenous Drug User with a Preexisting Goiter

2018 ◽  
Vol 2018 ◽  
pp. 1-4 ◽  
Author(s):  
Nikhil Yegya-Raman ◽  
Tabitha Copeland ◽  
Payal Parikh
Keyword(s):  
Drug User ◽  
Intravenous Drug User ◽  
Neck Mass ◽  
Subacute Thyroiditis ◽  
Suppurative Thyroiditis ◽  
First Case ◽  
Life Threatening ◽  
Acute Suppurative Thyroiditis ◽  
Limiting Condition ◽  
Iv Drug Use

Acute suppurative thyroiditis (AST) is an uncommon, potentially life-threatening cause of a rapidly enlarging neck mass. It may present similarly to subacute thyroiditis, a relatively benign and self-limiting condition. We report a case of AST in an adult intravenous (IV) drug user with a preexisting goiter who presented with a left forearm abscess that grew methicillin-sensitive Staphylococcus aureus. In this particular case, clinical suspicion for AST was high. As a result, early IV antibiotic therapy was initiated, and this led to rapid clinical improvement furthermore preventing airway compromise. To our knowledge, this is the first case of AST in the literature resulting from likely hematogenous spread in the setting of IV drug use and a preexisting goiter. Overall, this case highlights the importance of assessing risk factors for AST in patients whose presentations may seem more typical of subacute thyroiditis. Such an approach will lead to timely diagnosis and treatment to avoid potentially devastating consequences.

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