Korean J Women Health Nurs.  2017 Dec;23(4):287-298. 10.4069/kjwhn.2017.23.4.287.

Lived Experience of the Mother's Caring of Adult Children with Persistent Vegetative State

  • 1Department of Nursing, Backsuk University, Cheonan, Korea.
  • 2School of Nursing, Soonchunhyang University, Cheonan, Korea. jeungim@sch.ac.kr


The purpose of this study was to deepen understanding the nature of the care experience by the mothers with adult children in persistent vegetative state.
Participants were 7 mothers caring for their adult children in persistent vegetative state. Data were collected individually through in-depth interviews on their lived experiences. Also texts were included as data from literary works, novels, movies, essays, and arts containing on patients with persistent vegetative state and their mothers. Data were analyzed by van Manen's phenomenological methodology.
The essential themes of caring experiences of the mothers were as follows. The theme in relation to lived time has shown as back to the past and caring experience related lived body has emerged as locked the body in children. The theme related lived space was getting into the swamp and the theme in lived others was derived as lonely struggle into.
The nature of mothers' caring experiences for adult children in persistent vegetative state is summarized as "˜Do not off hand of hope in a locked state'. This study suggests long-term supports are necessary for mothers to care persistent vegetative state children.


Adult children; Caring; Mothers; Persistent vegetative state; Qualitative research

MeSH Terms

Adult Children*
Motion Pictures as Topic
Persistent Vegetative State*
Qualitative Research



1. Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state(1). New England Journal of Medicine. 1994; 330(21):1499–1508.
2. Laureys S, Antoine S, Boly M, Elincx S, Faymonville ME, Berré J, et al. Brain function in the vegetative state. Acta Neurologica Belgica. 2002; 102(4):177–185.
3. Crispi F, Crisci C. Patient in persistent vegetative state and what of their relatives? Nursing Ethics. 2000; 7(6):533–535.
4. Covelli V, Cerniauskaite M, Leonardi M, Sattin D, Raggi A, Giovannetti AM. A qualitative study on perceptions of changes reported by caregivers of patients in vegetative state and minimally conscious state: The "time gap experience". The Scientific World Journal. 2014; 657321:1–9.
5. Jo HG. A narrative inquiry into mothers'caring of young children with disabilities. Korean Journal of Early Childhood Special Education. 2015; 15(3):157–187.
6. Avesani R, Gambini MG, Albertini G. The vegetative state: A report of two cases with a longterm follow-up. Brain Injury. 2006; 20(3):333–338.
7. Leonardi M, Sattin D, Raggi A. An Italian population study on 600 persons in vegetative state and minimally conscious state. Brain Injury. 2013; 27(4):473–484.
8. Chiambretto P, Rossi Ferrario S, Zotti AM. Patient in a persistent vegetative state: Caregiver attitudes and reactions. Acta Neurologica Scandinavica. 2001; 104(6):364–368.
9. Cruzado JA, Elvira de la Morena MJ. Coping and distress in caregivers of patients with disorders of consciousness. Brain Injury. 2013; 27(7–8):793–798.
10. Kitzinger C, Kitzinger J. Grief, anger and despair in relatives of severely brain injured patients: Responding without patholo-gising. Clinical Rehabilitation. 2014; 28(7):627–631.
11. Hamama-Raz Y, Zabari Y, Buchbinder E. From hope to despair, and back: Being the wife of a patient in a persistent vegetative state. Qualitative Health Research. 2013; 23(2):231–240.
12. Lee KY, Park IS, So H. Parenting experience of parents with a disabled child. Korean Journal of Rehabilitation Nursing. 2008; 11(1):32–40.
13. Jeun CY. Mothers caring for children with severe disabilities overcome the process of life – A grounded theory. Public Administration Studies. 2012; 13(2):161–182.
14. Fitzmaurice S. A mother's narrative: Reflections on life with disability. Sexuality and Disability. 2002; 20(2):117–123.
15. Bourke-Taylor H, Howie L, Law M. Impact of caring for a school-aged child with a disability: Understanding mothers' perspectives. Australian Occupational Therapy Journal. 2010; 57(2):127–136.
16. Emerson E. Mothers of children and adolescents with intellectual disability: Social and economic situation, mental health status, and the self-assessed social and psychological impact of the child's difficulties. Journal of Intellectual Disability Research. 2003; 47(4–5):385–399.
17. Lee MH, Kim AN. A discussion of difficulties and needs felt by mothers who have children with severe/multiple brain lesions. Special Education Research. 2012; 11(2):117–143.
18. Lee HH. Mother's life who taking care of the child with severe disability of a rare disease. Korean Journal of Local Government & Administration Studies. 2015; 29(3):365–388.
19. Kim SH, Yoo EK. Ethnographic research on adjustment of mothers caring for their cancer children in Korea. Korean Journal of Women Health Nursing. 2015; 21(3):216–231.
20. Van Manen M. Researching lived experience: Human science for an action sensitive pedagogy. New York, NY: Suny Press;1990. p. 212. p.
21. Koh MH. Experiences of hope in clients with chronic schizophrenia. Journal of Korean Academy of Nursing. 2005; 35(3):555–564.
22. Standard Korean Dictionary. Vegetable state (SikMulInGan) [Internet]. Seoul: Author;2002. [cited 2016 May 1]. Available from:. http://stdweb2.korean.go.kr/search/View.jsp.
23. Dictionary.com. Vegetative: define vegetative at dictionary.com [Internet]. New York: Author;1995. [cited 2016 May 1]. Available from:. http://www.dictionary.com/browse/vegetative?s=ts.
24. Sandelowski M. The problem of rigor in qualitative research. Advanced in Nursing Science. 1986; 8(3):27–37.
25. Jeun CY, Seo M. Grounded theoretical approach to the life of mothers as a caretaker of children with a severe disability. The Journal of the Korea Contents Association. 2013; 13(4):239–249.
26. Leonardi M, Giovannetti AM, Pagani M, Raggi A, Sattin D. Burden and needs of 487 care givers of patients in vegetative state and in minimally conscious state: Results from a national study. Brain Injury. 2012; 26(10):1201–1210.
27. Chiambretto P, Moroni L, Guarnerio C, Bertolotti G, Prigerson HG. Prolonged grief and depression in caregivers of patients in vegetative state. Brain Injury. 2010; 24(4):581–588.
28. Cipolletta S, Gius E, Bastianelli A. How the burden of caring for a patient in a vegetative state changes in relation to different coping strategies. Brain Injury. 2014; 28(1):92–96.
29. Todd S, Jones S. Looking at the furture and seeing the past: The challenge of the middle years of parenting a child with intellectual disabilities. Journal of Intellectual Disability Research. 2005; 49(6):389–404.
30. Gray K, Knickman TA, Wegner DM. More dead than dead: Perceptions of persons in the persistent vegetative state. Cognition. 2011; 121(2):275–280.
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