Living with Chronic Illness

Prevalensi morbiditas dan mortalitas kasus gagal jantung saat ini semakin meningkat, menyebabkan pengobatan dan perawatan kompleks serta kejadian rehospitalisasi. Selain itu, komplikasi yang terjadi berdampak pada penurunan kualitas hidup pasien. Salah satu upaya mencegah perburukan kondisi adalah melalui self-care management yang dapat ditingkatkan melalui edukasi berbasis digital. Tujuan penelitian ini untuk mengetahui pengaruh pemberian edukasi melalui media aplikasi digital Cardicraf terhadap kepatuhan self-care management penderita gagal jantung. Desain penelitian menggunakan quasy experiment dengan one group pre dan post-test without control group. Sampel penelitian sebanyak 25 responden berdasarkan kriteria inklusi dengan teknik purposive sampling. Instrumen penelitian menggunakan Morisky 8-item Medication Adherence Questionnaire dan Self-Care of Heart Failure Index (SCHFI). Analisis data penelitian ini menggunakan paired sample t-test. Hasil penelitian menunjukkan rata-rata ...

Gagal jantung merupakan penyakit penyebab kematian terpenting di dunia, maka aplikasi mHealth adalah perangkat ponsel cerdas dalam meningkatkan pelayanan kesehatan sehingga menjadi pilihan yang tepat untuk penyakit gagal jantung. Tujuan untuk menganalisis penggunaan aplikasi mHealth dalam perubahan gaya hidup pasien gagal jantung di masyarakat. Menggunakan telaah jurnal/literature review dari online database : Proquest, ScienceDirect, Wiley Online Library, Scopus, dan IEEE Xplore dengan menggunakan kata kunci aplikasi mhealth, gaya hidup, dan gagal jantung, adapun artikel yang digunakan dari tahun 2018 sampai dengan tahun 2022 sehingga didapatkan 22 artikel yang sesuai. Berdasarkan topik yang ingin dibahas maka digunakan 14 artikel untuk ditinjau lebih lanjut, artikel tersebut dianalisis dengan cara di review satu-persatu menggunakan table yang terstruktur. Dari hasil pencarian online yang didapatkan dan telah dianalisis, maka aplikasi mHealth menciptakan peluang untuk meningkatkan perawatan gagal jantung, sehingga pasien maupun petugas kesehatan dapat menerima dan memberi pelayanan kesehatan yang efektif dan mendorong kepatuhan pengobatan dan pemantauan gejala pasien gagal jantung. Aplikasi mHealth terbukti meningkatkan hasil dan memberikan manfaat bagi dunia kesehatan dalam penanganan penyakit gagal jantung. Kata kunci: aplikasi mhealth; gaya hidup; gagal jantung

Gagal jantung merupakan penyakit penyebab kematian terpenting di dunia, maka aplikasi mHealth adalah perangkat ponsel cerdas dalam meningkatkan pelayanan kesehatan sehingga menjadi pilihan yang tepat untuk penyakit gagal jantung. Tujuan untuk menganalisis penggunaan aplikasi mHealth dalam perubahan gaya hidup pasien gagal jantung di masyarakat. Menggunakan telaah jurnal/literature review dari online database : Proquest, ScienceDirect, Wiley Online Library, Scopus, dan IEEE Xplore dengan menggunakan kata kunci aplikasi mhealth, gaya hidup, dan gagal jantung, adapun artikel yang digunakan dari tahun 2018 sampai dengan tahun 2022 sehingga didapatkan 22 artikel yang sesuai. Berdasarkan topik yang ingin dibahas maka digunakan 14 artikel untuk ditinjau lebih lanjut, artikel tersebut dianalisis dengan cara di review satu-persatu menggunakan table yang terstruktur. Dari hasil pencarian online yang didapatkan dan telah dianalisis, maka aplikasi mHealth menciptakan peluang untuk meningkatkan ...

Prevalensi morbiditas dan mortalitas kasus gagal jantung saat ini semakin meningkat, menyebabkan pengobatan dan perawatan kompleks serta kejadian rehospitalisasi. Selain itu, komplikasi yang terjadi berdampak pada penurunan kualitas hidup pasien. Salah satu upaya mencegah perburukan kondisi adalah melalui self-care management yang dapat ditingkatkan melalui edukasi berbasis digital. Tujuan penelitian ini untuk mengetahui pengaruh pemberian edukasi melalui media aplikasi digital Cardicraf terhadap kepatuhan self-care management penderita gagal jantung. Desain penelitian menggunakan quasy experiment dengan one group pre dan post-test without control group. Sampel penelitian sebanyak 25 responden berdasarkan kriteria inklusi dengan teknik purposive sampling. Instrumen penelitian menggunakan Morisky 8-item Medication Adherence Questionnaire dan Self-Care of Heart Failure Index (SCHFI). Analisis data penelitian ini menggunakan paired sample t-test. Hasil penelitian menunjukkan rata-rata ...

Prevalensi morbiditas dan mortalitas kasus gagal jantung saat ini semakin meningkat, menyebabkan pengobatan dan perawatan kompleks serta kejadian rehospitalisasi. Selain itu, komplikasi yang terjadi berdampak pada penurunan kualitas hidup pasien. Salah satu upaya mencegah perburukan kondisi adalah melalui self-care management yang dapat ditingkatkan melalui edukasi berbasis digital. Tujuan penelitian ini untuk mengetahui pengaruh pemberian edukasi melalui media aplikasi digital Cardicraf terhadap kepatuhan self-care management penderita gagal jantung. Desain penelitian menggunakan quasy experiment dengan one group pre dan post-test without control group. Sampel penelitian sebanyak 25 responden berdasarkan kriteria inklusi dengan teknik purposive sampling. Instrumen penelitian menggunakan Morisky 8-item Medication Adherence Questionnaire dan Self-Care of Heart Failure Index (SCHFI). Analisis data penelitian ini menggunakan paired sample t-test. Hasil penelitian menunjukkan rata-rata ...

Penyakit kronik mengakibatkan penurunan atau kerusakan  fungsi fisik dan mental sehingga pasien harus menjalani rawat inap ulang (readmission).Gagal jantung adalah penyakit kronik dengan durasi readmissions tertinggi di Indonesia. Tujuan penelitian ini adalah mengidentifikasi perawatan transisi yang dilaksanakan di RSUP H. Adam Malik Medan khususnya di ruang rawat inap kardiovaskuler. Preliminary study  pendekatan kualitatif dengan pengumpulan data melalui focus group discussion dan self report menggunakan kuesioner. Partisipan terdiri dari tiga kelompok yaitu staf manajemen rumah sakit,  perawat pelaksana dan pasien gagal jantung. Penyebaran kuesioner (self report) dalam penelitian ini dibedakan menjadi dua kelompok yaitu kelompok perawat dan kelompok pasien. Diskusi menghasilkan tema yaitu: persepsi partisipan tentang transitional care, proses pelaksanaan perawatan transisi, kolaborasi, dan hambatan pelaksanaan perawatan transisi.58,82% perawat memiliki pengetahuan yang cukup tent...

Congestive Heart Failure (CHF) is a chronic complex syndrome characterized by the inability of the heart to support Congestive Heart failure is a clinical syndrome characterized by shortness of breath, swelling of the ankles, and fatigue. One of the actions taken for the treatment is to improve self-management and patient medication adherence through a telemonitoring program. The study review's purpose was to identify the effect of a telemonitoring program in improving the self-management of congestive heart failure patients on medication adherence. The literature review used some electronic databases including Pubmed, Google Scholar, and ScienceDirect, and obtained seven articles that meet the inclusion criteria. The results showed that the telemonitoring program was effective in increasing medication adherence, blood pressure control adherence, improving medication regimens, reducing treatment costs, and improving self-management of patients with congestive heart failure. The ...

Gagal jantung merupakan penyakit yang membutuhkan regimen pengobatan yang lama dan kompleks. Tingginya tingkat kekambuhan pada pasien dengan gagal jantung menyebabkan kemungkinan lama hari perawatan atau kemungkinan untuk dirawat kembali (readmission) di rumah sakit. Penelitian ini bertujuan untuk menganalisis pengaruh pemanfaatan teknologi terhadap tingkat readmission pada pasien gagal jantung. Review sistematis digunakan sebagai metode dalam penelitian. Artikel diperoleh dari PubMed, ProQuest, ScienceDirect, dan EBSCO dengan kata kunci pencarian:"Management Technology", "Heart Failures", dan "Readmission". Artikel yang terbit dalam 10 tahun terkahir dan berbahasa Inggris dilakukan proses review. Selanjutnya, artikel dianalisis menggunakan analisis konten. Terdapat tiga artikel penelitian yang memenuhi kriteria dan mengindikasikan luaran penelitian. Pasien dengan gagal jantung memiliki resiko tinggi untuk dirawat inap kembali (readmission). Upaya pemanfaatan teknologi dalam menurunkan readmission dapat berupa interactive voice response system (IVRS) dengan daily self-management dan clinical monitoring, penggabungan pelatihan telepon perawatan transisi dengan telemonitoring, dan home telemonitoring. Diantara ketiga artikel tersebut bahwa interactive voice response system (IVRS) dengan daily self-management dan clinical monitoring lebih disarankan dibandingkan dua metode lainnya terhadap readmission 30 hingga 180 hari pada pasien gagal jantung. Inti dari Pemanfaatan teknologi yakni pasien gagal jantung mampu secara mandiri melakukan selfmanagement.

Gagal jantung merupakan penyakit yang membutuhkan regimen pengobatan yang lama dan kompleks. Tingginya tingkat kekambuhan pada pasien dengan gagal jantung menyebabkan kemungkinan lama hari perawatan atau kemungkinan untuk dirawat kembali (readmission) di rumah sakit. Penelitian ini bertujuan untuk menganalisis pengaruh pemanfaatan teknologi terhadap tingkat readmission pada pasien gagal jantung. Review sistematis digunakan sebagai metode dalam penelitian. Artikel diperoleh dari PubMed, ProQuest, ScienceDirect, dan EBSCO dengan kata kunci pencarian:"Management Technology", "Heart Failures", dan "Readmission". Artikel yang terbit dalam 10 tahun terkahir dan berbahasa Inggris dilakukan proses review. Selanjutnya, artikel dianalisis menggunakan analisis konten. Terdapat tiga artikel penelitian yang memenuhi kriteria dan mengindikasikan luaran penelitian. Pasien dengan gagal jantung memiliki resiko tinggi untuk dirawat inap kembali (readmission). Upaya pemanfaatan teknologi dalam menurunkan readmission dapat berupa interactive voice response system (IVRS) dengan daily self-management dan clinical monitoring, penggabungan pelatihan telepon perawatan transisi dengan telemonitoring, dan home telemonitoring. Diantara ketiga artikel tersebut bahwa interactive voice response system (IVRS) dengan daily self-management dan clinical monitoring lebih disarankan dibandingkan dua metode lainnya terhadap readmission 30 hingga 180 hari pada pasien gagal jantung. Inti dari Pemanfaatan teknologi yakni pasien gagal jantung mampu secara mandiri melakukan selfmanagement.

Pendahuluan: Congestive Heart Failure merupakan sindrom klinis berbahaya dari gangguan jantung fungsional atau struktural, mengganggu pengisian ventrikel dan sirkulasi sistemik tubuh. Kondisi tersebut menuntut kemampuan perawatan diri dari pasien Congestive Health Failure untuk mempertahankan kesehatannya.Tujuan dari literature review untuk menganalisis dampak edukasi perawat terhadap self care pasien Congestive Heart Failure. Metode: Literature review dengan pencarian artikel menggunakan kata kunci “Congestive Heart Failure”, “edukasi perawat”, dan “perawatan mandiri” dalam basis data PubMed, Google Scholar, dan ResearchGate. Hasil: Hasil dari pencarian artikel didapatkan 12 artikel. Analisis artikel didapatkan bahwa  edukasi perawat berdampak terhadap kemampuan self care pasien CHF yang membuktikan bahwa adanya perubahan perawatan diri pada pasien sebelum dan sesudah diberikan edukasi kesehatan oleh perawat. Kesimpulan: Edukasi perawat dapat meningkatkan kemandirian pasien.   Kata...

Heart failure is a chronic disease, which requires complex and long medication. Patients with heart failure are at high risk of readmission and prolong of stay in hospital. This review aimed to analysis the effect of technological management on readmission among patients with heart failure. We conducted systematic review in PubMed, ProQuest, ScienceDirect, and EBSCO databases. The serach terms were “Management Technology”, “Heart Failures”, and “Readmission”. Only published articles within last 10 years and English language were analysed using content analysis. We identified three articles met the criteria and proceeded for analysis. Patients with heart failure are in a higher risk of hospital readmission. To reduce the risk of hospital readmission, several technological approaches could be conducted, such as interactive voice response system with daily self-management and clinical monitoring, combination of translational care phone call and telemonitoring, and home telemonitoring. ...

PROGRAM:

09h15
Marie Gaille (INSHS, CNRS), introduction

09h30- 10h30
Marielle Macé, Directrice de recherche, CRAL, UMR 8556, CNRS/EHESS
Chronic breathing — on respiratory disease and forms of life

10h30-11h30
Todd Meyers, Associate Prof., Marjorie Bronfman, Chair in Social Studies of Medicine, McGill University
An Anthropologist reads Canguilhem reading Goldstein in the Clinic

11h30-12h30
Agathe Camus, Post-doctoral fellow, Sphere UMR 7219, Université Paris Cité
Chronic living & ordinary life

Pause déjeuner

14h30-15h30
Ayo Wahlberg, Prof., Anthropology, University of Copenhagen
The birth of “energy limiting conditions”: managing everyday lives with invisible disability in Denmark

15h30-16h30
Anne Gonon, Graduate School of Global Studies, Doshisha University, Kyoto, Japan
title to be determined

16h30-17h30

Estelle Ferrarese, Prof., Philosophy, CURAPP-ESS, UMR 7319, Université Picardie Jules Verne
Rhythm of life, rhythm of capitalism. Disabilities and ruptures in the capitalist form of life

ARGUMENT:

The place of chronic illness in daily life and the way in which it seems to be intertwined with one’s existence, in its biological, social and existential dimensions, have led us to speak of "vécu chronique" (1) and before us, Ayo Walhberg, to coin the idea of "chronic living" (2), in an attempt to grasp the specific nature of the life and experience of people suffering from one or more non-curable long-term illnesses.
In the wake of the work of Georges Canguilhem, in particular, and of the conception of illness as "another pace of life", these proposals, based on conceptual analyses and joining the analysis of certain ethnographic materials, highlight the intertwining of biological, social and existential dimensions in life with chronic illness, showing, for example, how "somatic disturbances spill over [...] into the social world and vice versa". As Ayo Walhberg and Lenore Manderson write, "everyday activities of parenting, making food, eating, celebrating, socializing, bathing, exercising, working, and more are shaped into new ’kinds of living’ by the specificities and exigencies of the medical condition(s) at stake, treatment(s), and related requirements of care and support" (3).

This issue is at the heart of the ANR Epiphinore project, which aims at generating new knowledge for the design of care and care pathways. In this project, our point of departure is the desire for a “normal life”, a "life as it was before", an "ordinary" life, as expressed by many people currently living in medical institutions or at home, under medicalized conditions due to a chronic and/or degenerative disease. Our guiding question is: how is this desire or aspiration to be understood? What is its content?


In order to contribute to the elaboration of an answer both on a conceptual and anthropological level, it seemed necessary to us to turn to the contribution of the reflection in terms of life forms. Thus, this workshop will aim at assessing the scope of these philosophical orientations, and examine up to which extent they are consistent or open up different conceptual and normative frames to understand of chronic condition and the aspiration to a “normal life”, a “life as before”, an “ordinary life”.
Indeed, these attempts to think of something like a ’chronic living’ meet, on certain points, the questions and concepts stemming from the relatively recent work on the forms of life (4). The emphasis placed in this research on the articulation of the social and the biological; the interest in what is done, practiced and implemented collectively and individually, for example, in the event of disasters that profoundly disrupt the lifestyles of the populations affected; the attention paid, in this context, to the forms that are invented or transformed and to the way in which "individuals who have become vulnerable use their bodies, become involved, work on their environment, and establish a new relationship with society" (5) probably give birth to a fruitful framework for thinking about situations of living in a chronically pathological state.


We propose to approach these questions with a special focus on the temporalities that cross, shape and transform certain "forms of life", and the processes of dislocation, adjustment and reconfiguration that bring these often complex and intertwined temporalities into play. In the case of certain chronic illnesses, several temporalities are at stake: that of the body, its transformations and sufferings; that of the illness and its often erratic evolution; that of care and medical treatment, but also that of social life, which is sometimes woven around the demands of the illness, as well as being able to put them on hold.
What form(s) of life are these complex temporalities likely to accommodate?


Among others, here are few questions that could be addressed:
– Without reducing the great diversity of pathological experiences to a single category designated by the term ’chronic illness’, and taking care, on the contrary, to allow for the multiplicity and singularity of experiences - which the notion of ’form of life’ allows - we will thus be able to ask ourselves whether there is anything like a common structure of experience in the experience of chronic illness and what role temporality plays in it.
– Can reflection on life forms be enriched by the consideration of such an experience and find in the attempt to apprehend something like a ’chronic experience’ and in this attention to the intricacy of temporalities something other than a source of examples?


References:

(1) Agathe Camus, Marie Gaille, Mathilde Lancelot, éditorial, dossier « Maladies chroniques et situations de handicap : expériences vécues et formes d’accompagnement tout au long de la vie », Alter, Revue européenne d’études sur le handicap, à paraître (2022)
(2) Lenore Manderson, Ayo Walhberg, « Chronic Living in a Communicable World », Medical Anthropology, Cross Cultural Studies in Health and Illness, vol. 39, 2020
(3) Lenore Manderson, Ayo Walhberg, « Chronic Living in a Communicable World », Medical Anthropology, Cross Cultural Studies in Health and Illness, vol. 39, 2020, p. 429
(4) Estelle Ferrarese et Sandra Laugier (dir.), Formes de vie, Paris, CNRS Editions, 2018
(5) Anne Gonon, « L’espace de la catastrophe. Naissance de sujets et nouvelles formes de vie », dans Estelle Ferrarese et Sandra Laugier (dir.), Formes de vie, Paris, CNRS Editions, 2018, p. 326

This essay recounts the author's experience of diagnosis of a rare respiratory condition in order to invite a broader reflection on the nature of diagnosis. Diagnosis is a pivotal moment in one's illness experience, and it can be viewed as both a closure of possibilities and an opening of new, unanticipated ones. The notion of anticipation is also important to the illness experience, in that anticipation and waiting characterize the illness experience generally-in waiting rooms, anticipating test results-as well as the change in one's attitude towards the future, which becomes fearsome in illness. Broken by Bad News I have been breathless for a long time. I lagged behind others when walking uphill. I became breathless when dancing. I couldn't play tennis. But I somehow convinced myself that this was normal. I was getting older-perhaps in one's mid-30s fitness drops like this, I thought? Perhaps I have "small lungs," my husband speculated. But we were both physically active, and as we were living in Australia

Pendahuluan: Congestive Heart Failure merupakan sindrom klinis berbahaya dari gangguan jantung fungsional atau struktural, mengganggu pengisian ventrikel dan sirkulasi sistemik tubuh. Kondisi tersebut menuntut kemampuan perawatan diri dari pasien Congestive Health Failure untuk mempertahankan kesehatannya.Tujuan dari literature review untuk menganalisis dampak edukasi perawat terhadap self care pasien Congestive Heart Failure. Metode: Literature review dengan pencarian artikel menggunakan kata kunci “Congestive Heart Failure”, “edukasi perawat”, dan “perawatan mandiri” dalam basis data PubMed, Google Scholar, dan ResearchGate. Hasil: Hasil dari pencarian artikel didapatkan 12 artikel. Analisis artikel didapatkan bahwa  edukasi perawat berdampak terhadap kemampuan self care pasien CHF yang membuktikan bahwa adanya perubahan perawatan diri pada pasien sebelum dan sesudah diberikan edukasi kesehatan oleh perawat. Kesimpulan: Edukasi perawat dapat meningkatkan kemandirian pasien.   Kata...

Chronic kidney disease (CKD) is one of world priority due to the increasing prevalence and poor outcome. Most of the patients experiencing problem and symptom since the early stage, however most of the previous study focusing on the patients that has undergoing renal replacement therapy (RRT). Thus, this study aimed to explore the quality of life among patients with CKD that has not undergoing routine RRT. A cross sectional study was conducted among 91 patients in chronic kidney disease who had not undergone dialysis. Quality of life was measure using KDQOL (Kidney Disease Quality of Life) 36 questionnaire. Clinical and laboratory were also recorded. It was revealed that most of the patients were on CKD stage 3 with diabetes as the comorbid. The highest score of the QoL is in domain effect of kidney disease (84.1 ± 14.41) followed by sign and symptom problems domain (80.8 ± 13.8); burden of kidney diseases (73.6 ± 28.7). While the mental and physical health component domain were the lowest score (39.8 ± 8.89 & 46.8 ± 9.4) most of patients.

Background and Aims: COVID-19 pandemic causes massive disruption of the global health system. The diabetic patients are the vulnerable parts population who are predicted to have a significant issue during the pandemic regarding the conventional type of consultation by face-to-face which may result in the higher risk of COVID-19 exposure. This study aims to observe the use of digital health services for diabetes management during COVID-19 pandemic. Methods: A scoping review was conducted in PubMed, ScienceDirect, and Google Scholar during August until September 2020. The keywords that are used on the searching process are diabetes AND digital service OR telemedicine OR technology AND COVID-19. The criteria included the selection of scientific publication as an original research and reviews. Results: All published articles were gathered from 3 search engines; PubMed, Science Direct, and Google Scholar. The discussion explicates the practical considerations that are in accordance with the current condition of each country. In order to do so, the evidence is classified based on the level of global digital health framework in the developed and developing countries. It was found that the minimal level of digital health that connects diabetes patients with healthcare providers was at level 2, which is by using the video mode. The most advanced is at level 3B, which is applied by using the CGM devices, which provide active monitoring, diagnosis, and treatment based on timely clinical judgment. Conclusion: It is feasible to utilize the digital health service during the COVID-19. This review is projected to be beneficial for the patient and health care providers to select the most feasible approach of digital health that merits the contextual resource.

Heart failure is a chronic disease, which requires complex and long medication. Patients with heart failure are at high risk of readmission and prolong of stay in hospital. This review aimed to analysis the effect of technological management on readmission among patients with heart failure. We conducted systematic review in PubMed, ProQuest, ScienceDirect, and EBSCO databases. The serach terms were “Management Technology”, “Heart Failures”, and “Readmission”. Only published articles within last 10 years and English language were analysed using content analysis. We identified three articles met the criteria and proceeded for analysis. Patients with heart failure are in a higher risk of hospital readmission. To reduce the risk of hospital readmission, several technological approaches could be conducted, such as interactive voice response system with daily self-management and clinical monitoring, combination of translational care phone call and telemonitoring, and home telemonitoring. Among the three articles, an interactive voice response system (IVRS) with daily self-management and clinical monitoring was recommended compared to other methods of 30-180 days of re- entry in heart failure patients. The core of the technological management was to enable patients in self-management on their diseases. Using a technology can assist patients with failure to reduce the admission rate and encourage them to do self-monitoring on their health states

In this paper I respond to Edward Harcourt’s suggestion that human excellences are structured in a way that allows us to see the multiplicity of life-forms that can be instantiated by different groups of excellences. I accept this layered (as he calls it) model, but suggest that Harcourt’s proposal is not pluralistic enough and offer three critical points. First, true pluralism would need to take a life-cycle view, thus taking into account plurality within, as well as between, lives. Second, Harcourt’s pluralism still posits physical health as a requirement for excellence, whereas I claim that the challenges of illness give more, not less, opportunity for excellence. Third, I make a more general claim that in certain salient cases (illness being one of them) it is precisely the absence of excellence that can facilitate virtue.