COVID health crisis and chronic illness: Protocol for a qualitative study (Preprint)

2021 ◽  
Author(s):  
Louise Institut La Personne En Médecine
Keyword(s):  
Chronic Illness ◽  
Family Care ◽  
Health Resources ◽  
Chronically Ill ◽  
Chronic Patients ◽  
Health Crisis ◽  
Care Network ◽  
Patient Organizations ◽  
Disease Associations ◽  
Action Frame

BACKGROUND The acute nature of COVID-19 epidemic puts a strain on the health resources usually dedicated to chronic illness. Induced changes of care practices and networks had major repercussions on the experience of chronically ill people. This paper presents the research protocol PARCOURS-COVID, and aims to study the effects of such a reorganization on their usual care network which fosters and qualify its quality and continuum. OBJECTIVE Our first objective is to document chronically ill people experience through its transformations and adaptations, both in its practical dimension – daily life and care – and subjective dimension (psychosocial experience of illness and relationship to the health system). The second objective of the study is to identify and reconstruct these reorganizations during the lockdown and the post-lockdown period, in order to grasp their repercussions chronologically and structurally. The last objective is to produce recommendations for adapting the healthcare system to future crises by better acknowledging the experience of chronic patients, their involvement and consultation in the preparation and management of a health crisis. METHODS The PARCOURS-COVID study is a qualitative and participatory research involving patient organizations as research partners and members of patient organizations as part of the research team. Three group of chronic diseases have been selected regarding the specificities of the care network they mobilise: cystic fibrosis and kidney disease, haemophilia and mental disorders. Four consecutive phases will be conducted: i) preparatory interviews; ii) in-depth individual interviews with patients of each pathology will be analysed using a qualitative method of thematic analysis; iii) results of these both latter will be triangulated through interviews with members of each patient’s care ecosystem; iv) focus-groups will be organized to discuss the results with research participants ie. representatives of chronic disease associations, patients, actors of the medical, psycho-social and family care network in a research-action frame. RESULTS The protocol study has undergone a peer-review by the French National Research Agency's scientific committee and has been approved by the Research Ethical Committee of the Université de Paris (registration number: IRB 00012020-59 June 28th, 2020). The project was funded from July 2020 through March 2021. Expected results will be disseminated in 2021 and 2022. CONCLUSIONS Our findings will better inform the stakes of the current health crisis on the management of the chronically ill and, more broadly, any future crisis for a population deemed to be at risk. They will improve health democracy by supporting a better transferability of knowledge between the scientific and citizen communities.

scholarly journals Adapting the SHARE Program for Use With Families Facing the Challenges of Chronic Illness

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 626-626
Author(s):  
Silvia Orsulic-Jeras ◽  
Carol Whitlatch
Keyword(s):  
Chronic Illness ◽  
Disease Progression ◽  
Chronic Conditions ◽  
Family Care ◽  
Diagnostic Procedures ◽  
Dementia Care ◽  
Evidence Based ◽  
Positive Outcomes ◽  
Community Settings ◽  
Care Partners

Abstract Advances in diagnostic procedures have helped to make diagnosing Alzheimer’s disease and other dementias more accurate and to occur earlier in the disease progression. For persons living with dementia and their family care partners, finding programs that meet their needs for support post diagnosis can be challenging. Likewise, for persons with chronic conditions, few programs exist which help care dyads to create a manageable plan of care that addresses each person’s concerns and fears. SHARE, (Support, Health, Activities, Resources, and Education), originally designed for dementia care partners, has shown positive outcomes for both members of the care partnership. This presentation describes the development of the six-session SHARE intervention, its implementation in community settings, and its current standing as an evidence-based program and product that has been commercialized. Discussion will also focus on adapting SHARE for use with chronic illness families, highlighting revisions to program procedures, materials, recruitment, and evaluation.

Risk behaviors screening in Thai adolescents with acute and chronic illnesses

2018 ◽  
Vol 0 (0) ◽  
Author(s):  
Lalit Leelathipkul ◽  
Suwanna Ruangkanchanasetr ◽  
Jiraporn Arunakul
Keyword(s):  
Chronic Illness ◽  
Health Risk ◽  
Risk Behaviors ◽  
Screen Time ◽  
Transition Period ◽  
Young Patients ◽  
Chronically Ill ◽  
Self Esteem ◽  
Chronic Illnesses ◽  
Learning Problems

Abstract Background Adolescence is considered as a transition period from childhood to adulthood. This transition leads to various types of risk behaviors. Ten percent of adolescents suffer from a chronic illness that can limit their daily activities and which may exhibit higher rates of risk behaviors than those without chronic illnesses. Objective To evaluate the prevalence of risk behaviors in chronically ill adolescents compared to adolescents without chronic illnesses and their associated risk factors. Methods We enrolled 312 patients aged 10–20 years who visited Ramathibodi Hospital from January 2015 to December 2017. There were 161 adolescents with chronic illnesses and 151 without a chronic illness. We used a computer-based program for the Youth Risk Behaviors Survey as well as a confidentiality interview. Statistical analyses included the chi-squared (χ2) and Student’s t-tests as appropriate. Results The risk behaviors in chronically ill adolescents were the following: learning problems, 86.3%; excessive screen time, 62.3%; unintentional injuries, 60.2%; depression, 38.5%; low self-esteem, 18.1%; substance abuse, 13% and sexual behavior, 6.2%. Youths with a chronic illness were more likely to report significantly higher risk of excessive screen time (62.3% vs. 48%, p = 0.01), depression (38.5% vs. 15.9%, p < 0.01) and, also low self-esteem (18.1% vs. 8.6%, p = 0.01) compared to those without chronic illness. Conclusions These results indicated that adolescents with chronic illnesses engage more in health risk behaviors and are prone to mental health and learning problems. These data emphasize the importance of health risk behavior screening and preventive counseling for young patients with chronic illnesses where these risks might worsen their disease.

Managing employees with chronic illness

2018 ◽  
Vol 26 (1) ◽  
pp. 7-10 ◽  
Author(s):  
Maninder Singh ◽  
P.S. James ◽  
Shirshendu Ganguli
Keyword(s):  
Chronic Illness ◽  
Human Resource ◽  
Design Methodology ◽  
Empirical Studies ◽  
Chronically Ill ◽  
Human Resource Managers ◽  
Future Directions ◽  
Content Type ◽  
Resource Managers ◽  
Practical Implications

Purpose The purpose of this paper is to identify future directions for human resource managers to provide work accommodations to chronically ill employees. Design/methodology/approach The authors researched empirical studies in management, occupational health journals, and reports on chronically ill employees. Findings The paper provides research-based practical insights for human resource practitioners to deal with the growing number of chronically ill employees. Practical implications The paper highlights solutions for human resource managers to create an inclusive workplace for employees with chronic illness. Originality/value The authors identified effective human resource and health practices for chronically ill employees, which would help to increase their productivity.

CHRONIC ILLNESS IN CHILDHOOD: PART I. EPIDEMIOLOGICAL AND CLINICAL CHARACTERISTICS

PEDIATRICS ◽  
1971 ◽  
Vol 47 (2) ◽  
pp. 405-414 ◽  
Author(s):  
Ivan Barry Pless ◽  
James W. B. Douglas
Keyword(s):  
Chronic Illness ◽  
Chronically Ill ◽  
Social Consequences ◽  
Physical Disorder ◽  
Healthy Children ◽  
Total Prevalence ◽  
Motor Activities ◽  
National Cohort ◽  
Health And Development ◽  
Psychological Educational

In 1946 a random sample (N = 5,362) of all children born in England, Wales, and Scotland during 1 week in March were selected for a longitudinal study of health and development. Educational, clinical, and psychological information were obtained from this national cohort at repeated intervals. At age 15, all children who had experienced a chronic physical disorder were identified. Their clinical profiles were defined and the social, psychological, and educational data on this group (N = 528) were compared with the remaining physically healthy children (N = 4,196). A total prevalence rate of 111 chronically ill children per thousand under age 16 was found. This figure is of the same order as those reported for other studies of a similar kind. Most of the children (58%) suffered from a condition which primarily affected motor activities; 20% involved vision, speech or hearing, and 20% affected appearance. Most disorders were mildly disabling and over 60% were still present at age 15. The composition of this population was compared with that of the remaining healthy children with respect to sex, social class, family size, and parents' health. These comparisons provide a background for subsequent reports describing the psychological, educational, and social consequences of chronic illness during childhood.

scholarly journals GENOGRAM AND ECO-MAP AS TOOLS FOR UNDERSTANDING FAMILY CARE IN CHRONIC ILLNESS OF THE YOUNG

2016 ◽  
Vol 25 (4) ◽  
Author(s):  
Ítala Paris de Souza ◽  
Roseney Bellato ◽  
Laura Filomena Santos de Araújo ◽  
Karla Beatriz Barros de Almeida
Keyword(s):  
Chronic Illness ◽  
Young Patients ◽  
Family Care ◽  
Data Organization ◽  
Family Organization ◽  
Adolescent Cancer ◽  
The Family ◽  
History Of ◽  
Analytical Tools ◽  
Depth Interviews

ABSTRACT The aim of this study was to understand family organization in care nucleus and supporting networks for families of young patients who experienced childhood kidney disease and adolescent cancer. It is a situational study using the history of life by means of in-depth interviews and observation. A genogram and an eco-map were used as analytical tools for data organization and analysis. The genogram showed family composition and the relationships established among its members and the care nucleus, strengthening the continuing and prolonged care required by the youth. The eco-map contrasted the punctual and unlinked work of the supporting network with the implicated, affective, and continuing work from the base network participation in the illness experienced by the youth. These tools allow health professionals to know the family organization in care, and the resources and networks with which they count on for support through the experience of a chronic illness.

Shame, silence and resistance: How my narratives of academia and kidney disease entwine

2019 ◽  
Vol 29 (2) ◽  
pp. 269-285 ◽  
Author(s):  
Rose Richards
Keyword(s):  
Chronic Kidney Disease ◽  
Chronic Illness ◽  
Kidney Disease ◽  
Academic Identity ◽  
Chronically Ill ◽  
Illness Narratives ◽  
Dominant Discourse ◽  
Subjugated Knowledge

As an academic with a chronic illness, it has taken me a while to understand shame’s impact on my academic identity and choices. In this article, through a process of narrative recuperation, I consider the challenges and contradictions of living as an academic with chronic kidney disease, an incurable and often debilitating illness that, for the most part, is invisible to others. By means of evocative autoethnography, I trace the trajectory of silencing shame I experienced around my condition in academia and I show how and why this changed over a number of years. My aim in doing this is to uncover subjugated knowledge of what it takes to live as a chronically ill academic and to be an advocate for other academics living with chronic illness. I theorise my study using Garland-Thomson, Shildrick and Leder, all of whom have worked with the othering effect of shame on the nonconforming body. These theorists have described ways of resisting shame and, partly thanks to them, I was able to find ways of fighting back and recovering. My intention in sharing these illness narratives is to speak back to a dominant discourse that favours invulnerability and a masculinised, disembodied way of being academic.

Is There a Pattern of Psychological Reactions to Chronic Illness Which is Associated with Death

1987 ◽  
Vol 17 (2) ◽  
pp. 169-181 ◽  
Author(s):  
Linda L. Viney ◽  
Mary Westbrook
Keyword(s):  
Content Analysis ◽  
Chronic Illness ◽  
Chronically Ill ◽  
Characteristic Pattern ◽  
Personal Construct ◽  
Similar Material ◽  
Psychological Reactions ◽  
Personal Construct Psychology ◽  
Degree Of Disability ◽  
Construct Psychology

In order to identify any pattern of psychological reactions to illness associated with later death, interview material from a sample of chronically ill people who died within months of being interviewed was compared with similar material from a sample of chronically ill people who did not die, as well as from a group of healthy people who did not die. The samples were matched for sex and age, and, where appropriate, for degree of disability and type of chronic illness. The comparisons were made by means of content analysis scales which were applied to a recorded segment of the interviews. A characteristic pattern of reactions among the chronically ill people who were later to die was established. This pattern included little uncertainty or directly expressed anger but much depression, guilt, and fear of bodily damage, together with many good feelings. In personal construct psychology terms, their construct systems were enabling them to anticipate what was happening to them more effectively than might have been expected.

Challenges faced by the chronically ill and disabled in high-risk hurricane areas

2009 ◽  
Vol 7 (6) ◽  
pp. 19 ◽  
Author(s):  
Robert J. Blendon, ScD ◽  
John M. Connolly, MSEd ◽  
John M. Benson, MA ◽  
Tami Buhr, AM ◽  
William E. Pollard, PhD ◽  
...  
Keyword(s):  
Chronic Illness ◽  
High Risk ◽  
Fresh Water ◽  
Chronically Ill ◽  
Vulnerable Group ◽  
Heat Exhaustion ◽  
Prescription Medicines

Using results from three surveys of adults in highrisk hurricane areas in eight Southern coastal states, this article examines the challenges faced by people from households where someone has a chronic illness or disability and would need help to evacuate. The analysis finds that 43 percent of people in this vulnerable group had not arranged the help they would need to evacuate. They had different reasons than other adults for why they would or might not evacuate in a future hurricane and were more likely than others (22 to 10 percent) to say they would go to an evacuation center if they did evacuate. Among those who had experience with a recent hurricane, people in this vulnerable group had encountered many more problems than others during and immediately after the storm, including more than one in four who suffered from heat exhaustion, who did not get needed prescription medicines, or who did not have enough fresh water.

Personal Medication Preparedness Among Veteran and Nonveteran Men and Women in the California Population

2013 ◽  
Vol 28 (4) ◽  
pp. 359-366 ◽  
Author(s):  
Kevin C. Heslin ◽  
June L. Gin ◽  
Melissa K. Afable ◽  
Karen Ricci ◽  
Aram Dobalian
Keyword(s):  
Chronic Illness ◽  
Armed Forces ◽  
Chronically Ill ◽  
California Health Interview Survey ◽  
Publication Type ◽  
Men And Women ◽  
Emergency Situations ◽  
Emergency Medication ◽  
Wide Range ◽  
California Population

AbstractIntroductionThe health of people with chronic medical conditions is particularly vulnerable to the disruptions caused by public health disasters, especially when there is massive damage to the medical infrastructure. Government agencies and national organizations recommend that people with chronic illness prepare for disasters by stockpiling extra supplies of medications.ProblemA wide range of chronic illnesses has long been documented among veterans of the US armed forces. Veterans with chronic illness could be at great risk of complications due to disaster-related medication disruptions; however, the prevalence of personal medication preparedness among chronically ill veterans is not currently known.MethodsData was used from the 2009 California Health Interview Survey on 28,167 respondents who reported taking daily medications. After adjusting for differences in age, health status, and other characteristics, calculations were made of the percentage of respondents who had a two-week supply of emergency medications and, among respondents without a supply, the percentage who said they could obtain one. Veteran men, veteran women, nonveteran men, and nonveteran women were compared.ResultsMedication supplies among veteran men (81.9%) were higher than among nonveteran women (74.8%; P < .0001) and veteran women (81.1%; P = 0.014). Among respondents without medication supplies, 67.2% of nonveteran men said that they could obtain a two-week supply, compared with 60.1% of nonveteran women (P = .012).DiscussionAmong adults in California with chronic illness, veteran men are more likely to have personal emergency medication supplies than are veteran and nonveteran women. Veteran men may be more likely to be prepared because of their training to work in combat zones and other emergency situations, which perhaps engenders in them a culture of preparedness or self-reliance. It is also possible that people who choose to enlist in the military are different from the general population in ways that make them more likely to be better prepared for emergencies.ConclusionVeterans in California have a relatively high level of emergency medication preparedness. Given the health complications that can result from disaster-related medication disruptions, this is a promising finding. Disasters are a national concern, however, and the personal preparedness of veterans in all parts of the nation should be assessed; these findings could serve as a useful reference point for such work in the future.HeslinK, GinJ, AfableM, RicciK, DobalianA. Personal medication preparedness among veteran and nonveteran men and women in the California population. Prehosp Disaster Med. 2013; 28(4):1-8.

The Economic Impact of Tuberculosis in Hospitals in New York City: A Preliminary Analysis

1993 ◽  
Vol 21 (3-4) ◽  
pp. 317-323 ◽  
Author(s):  
Peter S. Arno ◽  
Christopher J.L. Murray ◽  
Karen A. Bonuck ◽  
Philip Alcabes
Keyword(s):  
Public Health ◽  
New York ◽  
New York City ◽  
York City ◽  
Health Resources ◽  
Urban Centers ◽  
Health Crisis ◽  
Public Health Crisis ◽  
Aids Epidemic ◽  
The City

There is a nationwide resurgence of tuberculosis (TB) in the country’s urban centers; New York City stands at the forefront of this resurgence. The root causes are increased homelessness, drug addiction and poverty, all symbols of deteriorating social and economic conditions in the city. The inadequate level of public health resources devoted to TB has also contributed to its spread. Still, even with these factors, it is questionable whether the escalating number of TB cases in this country would have occurred without the reservoir of immunosuppressed persons, who are less resistant to the disease, created by the AIDS epidemic. The fear and urgency of this public health crisis, which has been emerging since the beginning of the last decade, are fueled by the rise of TB strains resistant to the first-line drugs and by the disease’s contagiousness.

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