Timely Communication Through Telehealth: Added Value for a Caregiver During COVID-19

Objective: This caregiver case study applies the lens of relational coordination theory (RC) to examine the value of telehealth as a medium of care coordination for a pediatric patient with hypermobile Ehlers-Danlos Syndrome (hEDS) during the COVID-19 pandemic.Background: The COVID-19 pandemic has placed an unprecedented burden on the delivery of healthcare around the globe and has increased the reliance on telehealth services. Delivering telehealth requires a high level of communication and coordination within and across providers as well as between providers, patients and their families. However, it is less clear how telehealth impacts the coordination of care. In this paper, we provide insight into the quality of care coordination between providers and an informal caregiver following policy changes to the provider payment structure in Massachusetts.Methods: This paper employs a single-case, autoethnographic study design where one of the authors uses their experiential insights, as mother of the patient, to inform a wider cultural and political understanding of the shift to remote caregiving for a pediatric patient with hEDS. Data was collected using reflective journaling, interactive interviews, and participant observation and analyzed using content analysis.Results: Findings revealed four interrelating roles of the caregiver including, logistics support, boundary spanner, home health aide, and cultural translator. The adoption of telehealth was associated with improved timeliness and frequency of communication between the caregiver and providers. Findings about the impact of telehealth adoption on accuracy of communication were mixed. Mutual respect between the caregiver and providers remained unchanged during the study period.Conclusions: This paper highlights areas where payer policy may be modified to incentivize timely communication and improve coordination of care through telehealth services. Additional insight from the perspective of an informal caregiver of a patient with a rare chronic disease provides an understudied vantage to the care coordination process. We contribute to relational coordination theory by observing the ways that caregivers function as boundary spanners, and how this process was facilitated by the adoption of telehealth. Insights from this research will inform the development of telehealth workflows to engage caregivers in a way that adds value and strengthens relational coordination in the management of chronic disease.

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Enhanced coordination of care to reduce medication risks in older home care clients in primary care: a randomized controlled trial

BMC Geriatrics ◽

10.1186/s12877-019-1353-2 ◽

2019 ◽

Vol 19 (1) ◽

Cited By ~ 2

Author(s):

Terhi Toivo ◽

Marja Airaksinen ◽

Maarit Dimitrow ◽

Eeva Savela ◽

Katariina Pelkonen ◽

...

Keyword(s):

Primary Care ◽

Randomized Controlled Trial ◽

Home Care ◽

Care Coordination ◽

Controlled Trial ◽

Potentially Inappropriate Medications ◽

Coordination Of Care ◽

Randomized Controlled ◽

The Impact ◽

Medication Changes

Abstract Background As populations are aging, a growing number of home care clients are frail and use multiple, complex medications. Combined with the lack of coordination of care this may pose uncontrolled polypharmacy and potential patient safety risks. The aim of this study was to assess the impact of a care coordination intervention on medication risks identified in drug regimens of older home care clients over a one-year period. Methods Two-arm, parallel, cluster randomized controlled trial with baseline and follow-up assessment at 12 months. The study was conducted in Primary Care in Lohja, Finland: all 5 home care units, the public healthcare center, and a private community pharmacy. Participants: All consented home care clients aged > 65 years, using at least one prescription medicine who were assessed at baseline and at 12 months. Intervention: Practical nurses were trained to make the preliminary medication risk assessment during home visits and report findings to the coordinating pharmacist. The coordinating pharmacist prepared the cases for the triage meeting with the physician and home care nurse to decide on further actions. Each patient’s physician made the final decisions on medication changes needed. Outcomes were measured as changes in medication risks: use of potentially inappropriate medications and psychotropics; anticholinergic and serotonergic load; drug-drug interactions. Results Participants (n = 129) characteristics: mean age 82.8 years, female 69.8%, mean number of prescription medicines in use 13.1. The intervention did not show an impact on the medication risks between the original intervention group and the control group in the intention to treat analysis, but the per protocol analysis indicated tendency for effectiveness, particularly in optimizing central nervous system medication use. Half (50.0%) of the participants with a potential need for medication changes, agreed on in the triage meeting, had none of the medication changes actually implemented. Conclusion The care coordination intervention used in this study indicated tendency for effectiveness when implemented as planned. Even though the outcome of the intervention was not optimal, the value of this paper is in discussing the real world experiences and challenges of implementing new practices in home care. Trial registration ClinicalTrials.gov (NCT02545257). Registered September 9 2015.

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Perceived Burden of Informal Caregivers of a Chronically Ill Older Family Member

GeroPsych ◽

10.1024/1662-9647/a000042 ◽

2011 ◽

Vol 24 (3) ◽

pp. 143-154 ◽

Cited By ~ 20

Author(s):

Elmar Gräßel ◽

Raffaela Adabbo

Keyword(s):

Family Member ◽

Informal Caregiver ◽

Chronically Ill ◽

Stress Model ◽

The Past ◽

Perceived Burden ◽

Hypothetical Construct ◽

Care Situation ◽

The Impact ◽

Further Development

The burden of caregivers has been intensively researched for the past 30 years and has resulted in a multitude of individual findings. This review illustrates the significance of the hypothetical construct of perceived burden for the further development and design of the homecare situation. Following explanations regarding the term informal caregiver, we derive the construct burden from its conceptual association with the transactional stress model of Lazarus and Folkman. Once the extent and characteristics of burden have been set forth, we then present the impact of perceived burden as the care situation. The question of predictors of burden will lead into the last section from which implications can be derived for homecare and relief of caregivers.

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Long-term effectiveness of elderly health care voucher scheme strategies: a system dynamics simulation analysis

BMC Public Health ◽

10.1186/s12889-021-11280-z ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Ka Chun Chong ◽

Hong Fung ◽

Carrie Ho Kwan Yam ◽

Patsy Yuen Kwan Chau ◽

Tsz Yu Chow ◽

...

Keyword(s):

Primary Care ◽

Chronic Disease ◽

Public Sector ◽

System Dynamics ◽

The Elderly ◽

Healthcare Services ◽

Dynamics Simulation ◽

Public And Private ◽

The Public ◽

The Impact

Abstract Background The elderly healthcare voucher (EHCV) scheme is expected to lead to an increase in the number of elderly people selecting private primary healthcare services and reduce reliance on the public sector in Hong Kong. However, studies thus far have reported that this scheme has not received satisfactory responses. In this study, we examined changes in the ratio of visits between public and private doctors in primary care (to measure reliance on the public sector) for different strategic scenarios in the EHCV scheme. Methods Based on comments from an expert panel, a system dynamics model was formulated to simulate the impact of various enhanced strategies in the scheme: increasing voucher amounts, lowering the age eligibility, and designating vouchers for chronic conditions follow-up. Data and statistics for the model calibration were collected from various sources. Results The simulation results show that the current EHCV scheme is unable to reduce the utilization of public healthcare services, as well as the ratio of visits between public and private primary care among the local aging population. When comparing three different tested scenarios, even if the increase in the annual voucher amount could be maintained at the current pace or the age eligibility can be lowered to include those aged 60 years, the impact on shifts from public-to-private utilization were insignificant. The public-to-private ratio could only be marginally reduced from 0.74 to 0.64 in the first several years. Nevertheless, introducing a chronic disease-oriented voucher could result in a significant drop of 0.50 in the public-to-private ratio during the early implementation phase. However, the effect could not be maintained for an extended period. Conclusions Our findings will assist officials in improving the design of the EHCV scheme, within the wider context of promoting primary care among the elderly. We suggest that an additional chronic disease-oriented voucher can serve as an alternative strategy. The scheme must be redesigned to address more specific objectives or provide a separate voucher that promotes under-utilized healthcare services (e.g., preventive care), instead of services designed for unspecified reasons, which may lead to concerns regarding exploitation.

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A syndemics approach to exercise is medicine

Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine ◽

10.1177/13634593211021481 ◽

2021 ◽

pp. 136345932110214

Author(s):

Caitlin Vitosky Clarke ◽

Brynn C Adamson

Keyword(s):

Mental Illness ◽

Chronic Disease ◽

Social Factors ◽

Social Conditions ◽

Self Concept ◽

Exercise Interventions ◽

Narrow Scope ◽

The Social ◽

Exercise Promotion ◽

The Impact

This paper offers new insights into the promotion of the Exercise is Medicine (EIM) framework for mental illness and chronic disease. Utilising the Syndemics Framework, which posits mental health conditions as corollaries of social conditions, we argue that medicalized exercise promotion paradigms both ignore the social conditions that can contribute to mental illness and can contribute to mental illness via discrimination and worsening self-concept based on disability. We first address the ways in which the current EIM framework may be too narrow in scope in considering the impact of social factors as determinants of health. We then consider how this narrow scope in combination with the emphasis on independence and individual prescriptions may serve to reinforce stigma and shame associated with both chronic disease and mental illness. We draw on examples from two distinct research projects, one on exercise interventions for depression and one on exercise interventions for multiple sclerosis (MS), in order to consider ways to improve the approach to exercise promotion for these and other, related populations.

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Disability pension among persons with chronic disease: Differential impact of a Danish policy reform

European Journal of Public Health ◽

10.1093/eurpub/ckaa228 ◽

2021 ◽

Author(s):

Jimmi Mathisen ◽

Natasja Koitzsch Jensen ◽

Jakob Bue Bjorner ◽

Henrik Brønnum-Hansen ◽

Ulla Christensen ◽

...

Keyword(s):

Chronic Disease ◽

Labour Market ◽

Disability Pension ◽

Policy Reform ◽

Disease Type ◽

Functional Disorders ◽

Differential Impact ◽

Hazard Ratios ◽

Study Population ◽

The Impact

Abstract Background In 2013, Denmark implemented a reform that tightened the criteria for disability pension, expanded a subsidized job scheme (‘flexi-job’) and introduced a new vocational rehabilitation scheme. The overall aim of the reform was to keep more persons attached to the labour market. This study investigates the impact of the reform among persons with chronic disease and whether this impact differed across groups defined by labour market affiliation and chronic disease type. Methods The study was conducted as a register-based, nationwide cohort study. The study population included 480 809 persons between 40 and 64 years of age, who suffered from at least one of six chronic diseases. Hazard ratios (HR) and 95% confidence intervals (CI) of being awarded disability pension or flexi-job in the 5 years after vs. the 5 years prior to the reform were estimated. Results Overall, the probability of being awarded disability pension was halved after the reform (HR = 0.49, CI: 0.47–0.50). The impact was largest for persons receiving sickness absence benefits (HR = 0.31, CI: 0.24–0.39) and for persons with functional disorders (HR = 0.38, CI: 0.32–0.44). Also, the impact was larger for persons working in manual jobs than for persons working in non-manual jobs. The probability of being awarded a flexi-job was decreased by one-fourth (HR = 0.76, CI: 0.74–0.79) with the largest impact for high-skilled persons working in non-manual jobs. Conclusion Access to disability pension and flexi-job decreased after the reform. This impact varied according to labour market affiliation and chronic disease type.

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The impact of chronic disease and disability on the elderly

South African Journal of Physiotherapy ◽

10.4102/sajp.v55i3.567 ◽

1999 ◽

Vol 55 (3) ◽

pp. 9-14

Author(s):

C. J. Eales

Keyword(s):

Health Care ◽

Chronic Disease ◽

Chronic Diseases ◽

Health Care Systems ◽

The Elderly ◽

Therapeutic Interventions ◽

Elderly Persons ◽

Care Systems ◽

And Function ◽

The Impact

Health care systems for elderly people should aim to delay the onset of illness, reducing the final period of infirmity and illness to the shortest possible time. The most effective way to achieve this is by health education and preventative medicine to maintain mobility and function. Changes in life style even in late life may result in improved health, effectively decreasing the incidence of chronic diseases associated with advancing age. This paper presents the problems experienced by elderly persons with chronic diseases and disabilities with indications for meaningful therapeutic interventions.

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The impact of physical pain and depression on sleep quality in older adults with chronic disease

Journal of Clinical Nursing ◽

10.1111/jocn.16000 ◽

2021 ◽

Author(s):

Li‐Chuan Tsai ◽

Shu‐Ching Chen ◽

Yen‐Chin Chen ◽

Li‐Yun Lee

Keyword(s):

Older Adults ◽

Chronic Disease ◽

Sleep Quality ◽

Physical Pain ◽

The Impact

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How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-020-01664-6 ◽

2021 ◽

Vol 16 (1) ◽

Author(s):

Amy Simpson ◽

Lara Bloom ◽

Naomi J. Fulop ◽

Emma Hudson ◽

Kerry Leeson-Beevers ◽

...

Keyword(s):

Care Coordination ◽

Structured Interviews ◽

School Work ◽

Travel Costs ◽

Care Plans ◽

Use Of Technology ◽

Number Of Factors ◽

Qualitative Interview Study ◽

The Uk ◽

The Impact

Abstract Background Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process. Results Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and carers, either attributed to or exacerbated by uncoordinated care, included: impact on physical health (including fatigue), financial impact (including loss of earnings and travel costs), and psychosocial impact (including disruption to school, work and emotional burden). Overall data highlight the importance of flexible care, which meets individual needs throughout patients’/carers’ journeys. Specifically, study participants suggested that the impacts may be addressed by: having support from a professional to coordinate care, changing the approach of clinics and appointments (where they take place, which professionals/services are available and how they are scheduled), and improving communication through the use of technology, care plans, accessible points of contact and multi-disciplinary team working. Conclusion This study provides further evidence of impacts of uncoordinated care; these may be complex and influenced by a number of factors. Approaches to coordination which improve access to care and lessen the time and burden placed on patients and carers may be particularly beneficial. Findings should influence future service developments (and the evaluation of such developments). This will be achieved, in the first instance, by informing the CONCORD Study in the UK.

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On the Impact of Treatment Restrictions for the Indigent Suffering from a Chronic Disease: The Case of Compassionate Dialysis

Service Science ◽

10.1287/serv.2021.0276 ◽

2021 ◽

Author(s):

Olga Bountali ◽

Sila Çetinkaya ◽

Vishal Ahuja

Keyword(s):

Chronic Disease ◽

Performance Measures ◽

Safety Net ◽

Unintended Consequences ◽

Treatment Delays ◽

System Load ◽

Network Characteristics ◽

Screening Assessment ◽

The Impact ◽

Treatment Restrictions

We analyze a congested healthcare delivery setting resulting from emergency treatment of a chronic disease on a regular basis. A prominent example of the problem of interest is congestion in the emergency room (ER) at a publicly funded safety net hospital resulting from recurrent arrivals of uninsured end-stage renal disease patients needing dialysis (a.k.a. compassionate dialysis). Unfortunately, this is the only treatment option for un/under-funded patients (e.g., undocumented immigrants) with ESRD, and it is available only when the patient’s clinical condition is deemed as life-threatening after a mandatory protocol, including an initial screening assessment in the ER as dictated and communicated by hospital administration and county policy. After the screening assessment, the so-called treatment restrictions are in place, and a certain percentage of patients are sent back home; the ER, thus, serves as a screening stage. The intention here is to control system load and, hence, overcrowding via restricting service (i.e., dialysis) for recurrent arrivals as a result of the chronic nature of the underlying disease. In order to develop a deeper understanding of potential unintended consequences, we model the problem setting as a stylized queueing network with recurrent arrivals and restricted service subject to the mandatory screening assessment in the ER. We obtain analytical expressions of fundamental quantitative metrics related to network characteristics along with more sophisticated performance measures. The performance measures of interest include both traditional and new problem-specific metrics, such as those that are indicative of deterioration in patient welfare because of rejections and treatment delays. We identify cases for which treatment restrictions alone may alleviate or lead to severe congestion and treatment delays, thereby impacting both the system operation and patient welfare. The fundamental insight we offer is centered around the finding that the impact of mandatory protocol on network characteristics as well as traditional and problem-specific performance measures is nontrivial and counterintuitive. However, impact is analytically and/or numerically quantifiable via our approach. Overall, our quantitative results demonstrate that the thinking behind the mandatory protocol is potentially naive. This is because the approach does not necessarily serve its intended purpose of controlling system-load and overcrowding.

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