You Become Pretty Much a Healthcare Worker
The Parenting of a Child with Inherited Metabolic Disease and its Metaphors
Bibliographic Data
| ID | 3620100 |
|---|---|
| Authors | Filip Rogalski (0000-0002-0276-7825, University of Gdańsk, corresponding author) |
| Year | 2023 |
| Volume | 10 |
| Issue | 3 |
| Pages | 1-24 |
| Publication date | 2023-09-27 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Medicine Anthropology Theory (JOURNAL) |
| Journal identifiers | ISSN: 2405-691X • E-ISSN: 2405-691X |
| Publisher | Edinburgh University Library (PUBLISHER) |
| DOI | 10.17157/mat.10.3.6702 |
| OpenAlex | W4387364399 |
| Language | EN |
| References cited | 21 |
Parents of a child diagnosed with a rare inherited metabolic disease (IMD) are required to actively participate in their child's treatment, by managing the risk of metabolic crisis and ensuring that they adhere to a stringent diet. In this Research Article, I discuss the specific roles, tasks, and knowledge that Polish and Swedish parents of children with IMDs have developed. I also pay critical attention to the notions and metaphors that parents, clinicians, and social scientists use to describe these. However, I argue, they also overly stress an individualistic perspective and obscure the relationality of care, collaboratively achieved between parents, patients, relatives, and healthcare providers
Developmental psychology · Disease · Health care · Individualism · Metabolic disease · Pathology · Political science · BRCA gene mutations in cancer · Computer Science · Law · Medicine · Psychology · Social Psychology
The Patient 2. Many
Experiential knowledge as a resource for coping with uncertainty
O (nie)naturalności jedzenia. Pokarmy i technologie biomedyczne w chorobach metabolicznych
Chronic Homework in Emerging Borderlands of Healthcare
In search of experiential knowledge
Becoming 'Half a Doctor
Action Stations
Experiential Knowledge
Research "in the wild" and the shaping of new social identities
Anthropological perspectives on chronic illness
Caught up in Care
Epistemologies of Living With and Treating Rare Metabolic Disorders
Mundo quase árido
From Communities of Practice to Epistemic Communities
Normalised Eating And Dietary Guidelines in LCHAD Deficiency
Reverberations
Postindustrial Metabolism
People as Affordances
Disability/Anthropology
Counting bodies? On future engagements with science studies in medical anthropology
Genetic risk and the birth of the somatic individual
| Highly cited | No |
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