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Who will take care of him when I am gone? A study of life - dependency work and vulnerability

Mellstrand Sajnovic, Emma LU (2025) SOCK10 20251
Sociology
Abstract (Swedish)
This essay explores the lived experiences of parents of children with neurodevelopmental
disabilities in relation to institutional interactions. Using a narrative inquiry approach
(Clandinin & Connelly, 2000), 13 semi-structured interviews were conducted and analysed to
investigate emotional and moral dimensions of the participants' stories. Drawing on Kittays
(1999) ethic of care, the essay highlights caregiving as embedded in networks of
interdependence and institutional structures. Parents frequently encountered poor
coordination between institutions, creating emotional strain, forcing them to "fight" for
assistance. Methodologically, the study emphasises the value of narrative inquiry in capturing
complex and situated... (More)
This essay explores the lived experiences of parents of children with neurodevelopmental
disabilities in relation to institutional interactions. Using a narrative inquiry approach
(Clandinin & Connelly, 2000), 13 semi-structured interviews were conducted and analysed to
investigate emotional and moral dimensions of the participants' stories. Drawing on Kittays
(1999) ethic of care, the essay highlights caregiving as embedded in networks of
interdependence and institutional structures. Parents frequently encountered poor
coordination between institutions, creating emotional strain, forcing them to "fight" for
assistance. Methodologically, the study emphasises the value of narrative inquiry in capturing
complex and situated experiences, while acknowledging its limitations regarding
generalizability. The study calls for future research on cross-institutional cooperation and
highlights the need for tailored and relationally sensitive support systems. Recognising and
valuing caregiving as essential work in order to improve conditions for families navigating a
life with NDD. (Less)
Please use this url to cite or link to this publication:
author
Mellstrand Sajnovic, Emma LU
supervisor
organization
course
SOCK10 20251
year
type
M2 - Bachelor Degree
subject
keywords
Dependency work, Neurodevelopmental disorder (NDD), Parents, Ethics of care, Caregivers
language
English
id
9208249
date added to LUP
2025-07-14 11:14:11
date last changed
2025-07-14 11:14:11
@misc{9208249,
  abstract     = {{This essay explores the lived experiences of parents of children with neurodevelopmental 
disabilities in relation to institutional interactions. Using a narrative inquiry approach 
(Clandinin & Connelly, 2000), 13 semi-structured interviews were conducted and analysed to 
investigate emotional and moral dimensions of the participants' stories. Drawing on Kittays 
(1999) ethic of care, the essay highlights caregiving as embedded in networks of 
interdependence and institutional structures. Parents frequently encountered poor 
coordination between institutions, creating emotional strain, forcing them to "fight" for 
assistance. Methodologically, the study emphasises the value of narrative inquiry in capturing 
complex and situated experiences, while acknowledging its limitations regarding 
generalizability. The study calls for future research on cross-institutional cooperation and 
highlights the need for tailored and relationally sensitive support systems. Recognising and 
valuing caregiving as essential work in order to improve conditions for families navigating a 
life with NDD.}},
  author       = {{Mellstrand Sajnovic, Emma}},
  language     = {{eng}},
  note         = {{Student Paper}},
  title        = {{Who will take care of him when I am gone? A study of life - dependency work and vulnerability}},
  year         = {{2025}},
}