scholarly journals Three Cases of Severe ME/CFS in Adults

Healthcare ◽  
2021 ◽  
Vol 9 (2) ◽  
pp. 215
Author(s):  
Leah R. Williams ◽  
Carol Isaacson-Barash
Keyword(s):  
Health Care ◽  
Cognitive Impairment ◽  
Health Care Providers ◽  
Orthostatic Intolerance ◽  
Chronic Fatigue ◽  
Care Providers ◽  
Mild Case ◽  
Healthy Individuals ◽  
System Disease ◽  
Fatigue Syndrome

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, only partially understood multi-system disease whose onset and severity vary widely. Symptoms include overwhelming fatigue, post-exertional malaise, sleep disruptions, gastrointestinal issues, headaches, orthostatic intolerance, cognitive impairment, etc. ME/CFS is a physiological disease with an onset often triggered by a viral or bacterial infection, and sometimes by toxins. Some patients have a mild case and are able to function nearly on a par with healthy individuals, while others are moderately ill and still others are severely, or even, very severely ill. The cohort of moderately to very severely ill is often housebound or bedbound, has lost employment or career, and has engaged in a long, and often futile, search for treatment and relief. Here, we present three case studies, one each of a moderately ill, a severely ill, and a very severely ill person, to demonstrate the complexity of the disease, the suffering of these patients, and what health care providers can do to help.

scholarly journals Assessment of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome): A Case Study for Health Care Providers

MedEdPORTAL ◽  
2016 ◽  
Vol 12 (1) ◽  
Author(s):  
Dana J. Brimmer ◽  
James F. Jones ◽  
Roumiana Boneva ◽  
Charlotte Campbell ◽  
Jin-Mann S. Lin ◽  
...  
Keyword(s):  
Health Care ◽  
Chronic Fatigue Syndrome ◽  
Health Care Providers ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
Care Providers ◽  
Fatigue Syndrome

scholarly journals Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected

Healthcare ◽  
2021 ◽  
Vol 9 (5) ◽  
pp. 553
Author(s):  
Patricia A. Fennell ◽  
Nancy Dorr ◽  
Shane S. George
Keyword(s):  
Health Care ◽  
Chronic Illness ◽  
Chronic Fatigue Syndrome ◽  
Health Care Providers ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
Care Providers ◽  
Care Community ◽  
Fatigue Syndrome ◽  
Patients Experience

People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.

scholarly journals Home Health Registered Nurses’ Experiences With Financial Exploitation of Older Women With Cognitive Impairment

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 701-701
Author(s):  
Carol Rogers ◽  
Lisa DeSpain ◽  
Janet Wilson
Keyword(s):  
Older Adults ◽  
Health Care ◽  
Cognitive Impairment ◽  
Health Care Providers ◽  
Home Health Care ◽  
Elder Abuse ◽  
Home Health ◽  
Care Providers ◽  
Financial Exploitation ◽  
Data Saturation

Abstract Older adults diagnosed with cognitive impairment (CI) who live at home are at high risk for FE due to dependence on caregivers and diminishing cognitive and financial capacities. Health care providers are mandated reporters for elder abuse, that includes financial exploitation (FE), one of the seven types of older adult maltreatments. Twenty Home Health Care Nurses (HHRN) of older adults in Oklahoma were interviewed to discover their understanding and experiences with FE. Transcripts were analyzed by conventional content analysis. Line-by-line codes were generated inductively and codes were grouped into categories and themes until data saturation was reached. Five themes emerged: Red Flags, Familiar Offenders, Dire Consequences, Barriers/Facilitators, Doing Better. Conclusions: HHRNs are an untapped resource to provide suggestions for improvements of FE detection/reporting of older adults with CI and to help formulate policies, procedures, strategies to improve coordination and communication among healthcare, law enforcement, and social service systems.

Making the Informal Formal: Discussing and Completing Advance Care Plans in Care Dyads with Cognitive Impairment

2021 ◽  
pp. 082585972110630
Author(s):  
Megan Shepherd-Banigan ◽  
Cassie B. Ford ◽  
Nicole DePasquale ◽  
Valerie A. Smith ◽  
Emmanuelle Belanger ◽  
...  
Keyword(s):  
Health Care ◽  
Cognitive Impairment ◽  
Health Care Providers ◽  
Living Will ◽  
Care Providers ◽  
Positive Role ◽  
Cross Sectional ◽  
Care Plans ◽  
Care Partners ◽  
Advance Care

Background Discussing advance care planning (ACP) with care partners may be a steppingstone to the completion of advance directives (ADs) for persons with cognitive impairment (PwCIs). Objectives To examine whether PwCI-reported occurrence of and PwCI-care partner agreement about ACP discussions are associated with completion of ADs. Design and Subjects We conducted a secondary, cross-sectional analysis of data from 1672 PwCI-care partner dyads in the BLINDED study. PwCIs were Medicare beneficiaries in the US, aged >65 years, and diagnosed with mild cognitive impairment or dementia. Care partners were identified by PwCIs as being most involved in their health care. Measurements PwCIs’ completion of ADs was determined by 1 or more affirmative responses to dichotomous indicators for formalizing a living will, medical directive, or durable power of attorney for health care. Discussion occurrence was based on PwCI reports and agreement between PwCI and care partner reports of prior conversations about PwCIs’ ACP preferences between PwCIs and care partners. Results In logistic regression models adjusted for PwCI and care partner characteristics, PwCIs who had (vs. had not) discussed ACP were 10% more likely to complete ADs. PwCIs from dyads agreeing (vs. disagreeing) a discussion occurred were 7% more likely to complete ADs. PwCIs from care dyads in agreement (vs. disagreement) about non-discussion were 11% less likely to formalize ADs. Conclusions Discussing ACP with care partners plays a direct, positive role in completing ADs among PwCIs. Health care providers who approach ACP as a dyadic, communicative decision-making process from the outset may facilitate PwCIs’ uptake of ADs.

scholarly journals The needs of Pacific families affected by age-related cognitive impairment in New Zealand: interviews with providers from health-care organisations

2021 ◽  
Vol 13 (4) ◽  
pp. 317
Author(s):  
Vanda Symon ◽  
Rosalina Richards ◽  
Pauline Norris ◽  
Talai Mapusua ◽  
Leigh Hale
Keyword(s):  
Health Care ◽  
Cognitive Impairment ◽  
New Zealand ◽  
Cognitive Decline ◽  
Health Care Providers ◽  
Service Providers ◽  
Care Providers ◽  
Access To Services ◽  
Age Related ◽  
Poor Access

ABSTRACTINTRODUCTIONPacific populations in New Zealand are aging, but little is known in the health-care environment about their experiences with cognitive impairment.AIMThe aim was to explore the needs of Pacific peoples affected by age-related cognitive decline from the perspectives of health-care providers.METHODSSix health-care service providers from organisations focused on Pacific patients were interviewed to determine services available to aged Pacific peoples, access, and whether they met Pacific people’s needs.RESULTSThree areas of concern were identified by all participants: access to services; getting a diagnosis; and communication and language. Many experienced a lack of information and poor access to services. Diagnosis of cognitive impairment was frequently made difficult by inconsistent access to general practitioners in lower socio-economic areas. Communication was hindered by poor access to information in Pacific languages.DISCUSSIONCommon themes noted by all participating health-care providers indicated the needs of aged Pacific people experiencing cognitive decline were often not being met.

scholarly journals A health care record review of early mobility activities after fragility hip fracture: Utilizing the French systematic method to inform future interventions

2020 ◽  
Author(s):  
Lynn Haslam-Larmer ◽  
Kevin Woo ◽  
Mohammad Auais ◽  
Catherine Donnelly ◽  
Vincent DePaul
Keyword(s):  
Health Care ◽  
Cognitive Impairment ◽  
Hip Fracture ◽  
Health Care Providers ◽  
Care Providers ◽  
Early Mobility ◽  
Fragility Hip Fracture ◽  
Hip Fracture Surgery ◽  
Fracture Function ◽  
Practice Gaps

Abstract Background A fragility hip fracture is a serious injury in older adults. Following a fragility fracture, a large percentage of patients are unable to regain their pre-fracture level of mobility. There are several international guidelines recommending early mobility after surgery. We do not know the utilization of these early mobility recommendations by health care providers within our institution. An evidence to practice gap occurs when there is a failure to implement best practices. Utilization of a systematic method allows for a strategic approach to assessment of an evidence to practice gap. A recent publication of quality standards in Ontario provides an opportunity for a local needs assessment of potential evidence to practice gaps. The aim of this project was to identify evidence to practice gaps in health care provider implementation of recommendations for early mobility after fragility hip fracture surgery.Methods A retrospective chart review was performed to document the rates of early mobility activities during the first five days after hip fracture surgery at a large tertiary centre in Toronto, Ontario. Patients with cognitive impairment were included.Results Early mobility activities in this older adult population are initiated in the first five days after surgery to varying degrees. Between 11% - 50% of patients are not participating in early mobility activities, thereby not meeting recommendations. Those with low pre-fracture function and cognitive impairment have lower rates of participation when compared to those with a high pre-fracture function and no cognitive impairment.Conclusions The chart review has identified a paucity of contextual information which may influence health care providers’ behaviours related to early mobility. The chart audit is limited in its ability to assess the systems issues, which may have an influence on the health care provider behaviour. Considering the lack of information in these areas, we have identified that further work is required to explore factors which may be having an impact on the health care provider’s ability to engage the patients in early mobility activities.

scholarly journals A health care record review of early mobility activities after fragility hip fracture: Utilizing the French systematic method to inform future interventions

2020 ◽  
Author(s):  
Lynn Haslam-Larmer ◽  
Kevin Woo ◽  
Mohammad Auais ◽  
Catherine Donnelly ◽  
Vincent DePaul
Keyword(s):  
Health Care ◽  
Cognitive Impairment ◽  
Hip Fracture ◽  
Health Care Providers ◽  
Care Providers ◽  
Early Mobility ◽  
Fragility Hip Fracture ◽  
Hip Fracture Surgery ◽  
Fracture Function ◽  
Practice Gap

Abstract Background A fragility hip fracture is a serious injury in older adults. Following a fragility fracture, a large percentage of patients are unable to regain their pre-fracture level of mobility. There are several international guidelines recommending early mobility after surgery. We do not know the utilization of these early mobility recommendations by health care providers within our institution. An evidence to practice gap occurs when there is a failure to implement best practices. Utilization of a systematic method allows for a strategic approach to assessment of an evidence to practice gap. A recent publication of quality standards in Ontario provides an opportunity for a local needs assessment of potential evidence to practice gaps. Objective To identify if there is an evidence to practice gap in health care provider implementation of recommendations for early mobility after fragility hip fracture surgery. Methods A retrospective chart review was performed to document the rates of early mobility activities during the first five days after hip fracture surgery at a large tertiary centre in Toronto, Ontario. Patients with cognitive impairment were included. Results Early mobility activities in this older adult population are initiated in the first five days after surgery to varying degrees. Between 11% - 50% of patients are not participating in early mobility activities, thereby not meeting recommendations. Those with low pre-fracture function and cognitive impairment have lower rates of participation when compared to those with a high pre-fracture function and no cognitive impairment. Conclusions The chart review has identified a paucity of contextual information which may influence health care providers’ behaviours related to early mobility. The chart audit is limited in its ability to assess the systems issues, which may have an influence on the health care provider behaviour. Considering the lack of information in these areas, we have identified that further work is required to explore factors which may be having an impact on the health care provider’s ability to engage the patients in early mobility activities.

Chronic Fatigue

2009 ◽  
Vol 22 (1) ◽  
pp. 10-15
Author(s):  
Joyce A. Lasseter
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Literature Review ◽  
Health Care Providers ◽  
Chronic Conditions ◽  
Chronic Fatigue ◽  
Concept Analysis ◽  
Care Providers ◽  
Common Understanding

Because of the widespread nature of chronic fatigue, health care providers need a common understanding of chronic fatigue to enable effective communication. To aid this understanding a concept analysis was undertaken using a modified version of Rodger’s evolutionary method of concept analysis. The literature review yielded many resources focused on defining fatigue and relating it to many diverse chronic conditions. This article also discusses the differences between chronic fatigue and acute episodes of fatigue. Chronic fatigue is a subjective, unpleasant, changeable, and exhausting experience that adversely affects quality of life. Whereas rest or sleep often relieves acute fatigue, chronic fatigue is unrelenting. Chronic fatigue has multiple antecedents and is a component of a diverse array of chronic diseases.

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