Chronic grief: Experiences of working parents of children with chronic illness

Contemporary Nurse

Volumn 23, Issue 2, 2006, Pages 228-242

  George, Ajesh ^a   Vickers, Margaret H ^a   Wilkes, Lesley ^a   Barton, Belinda ^b  

^a UNIVERSITY OF WESTERN SYDNEY   (Australia)

^b CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

Author keywords

Carers; Chronic illness; Chronic sorrow; Employment; Grief; Health professionals

Indexed keywords

ADULT; ARTICLE; CHILD; CHILD PARENT RELATION; CHRONIC DISEASE; EMPLOYMENT; FEMALE; GRIEF; HUMAN; INTERVIEW; MALE; MIDDLE AGED;

ADULT; CHILD; CHRONIC DISEASE; EMPLOYMENT; FEMALE; GRIEF; HUMANS; INTERVIEWS; MALE; MIDDLE AGED; PARENT-CHILD RELATIONS;

EID: 34247580249     PISSN: 10376178     EISSN: None     Source Type: Journal    
DOI: 10.5172/conu.2006.23.2.228     Document Type: Article

References (72)

1. Atkinson SD (1994) 'Grieving and loss in parents with a schizophrenic child' American Journal of Psychiatry 151(8): 1137-1139.
2. Barnett WS and Boyce GC (1995) 'Effects of children with down's syndrome on parent's activity' American Journal of Mental Retardation 100: 115-127.
3. Bendell D, Field T, Yando R, Lang C, Martinez A and Pickens J (1994) '"Depressed" mothers' perceptions of their preschool children's vulnerability' Child Psychiatry&Human Development 24: 183-190.
4. Bianchi SM (2000) 'Maternal employment and time with children: Dramatic change or surprising continuity?' Demography 37 (4): 401-414.
5. Blum RW (1991) 'Overview of transition issues for youth with disabilities' Pediatrician 18: 101-104.
6. Bonanno GA and Kaltman S (2001) 'The varieties of grief experiences' Clinical Psychology Review 21(5): 705-34.
7. Burke SO and Kauffmann E (1990) Children with severe and/ or long-term conditions:A survey of parents' needs and service demands. Kingston, Ontario, Canada, Almost Home and Interagency Council for Children, Medically Complex Children's Committee.
8. Burke SO, Kauffman E, Harrison M and Wiskin N (1999) 'Assessment of stressors in families with a child who has a chronic condition' The American Journal of Maternal/Child Nursing 24(2): 98-106.
9. Buschmann PR (1988) 'Pediatric orthopaedics: dealing with loss and chronic sorrow' Loss, Grief and Care 2: 39-44.
10. Canam C (1993) 'Common adaptive forks facing parents of children with chronic illness conditions' Journal of Advanced Nursing 18: 46-53.
11. Cheng P and So-Kum Tang C (1995) 'Coping and psychological distress of Chinese parents of children with Down's syndrome' Ment Retard 33: 10-20.
12. Clements DB, Copeland LG and Loftus M (1990) 'Critical times for families with a chronically ill child' Pediatric Nursing 16(2): 157-161.
13. Clubb RL (1991) 'Chronic Sorrow:Adaptation patterns of parents with chronically ill children' Pediatric Nursing 17: 462-466.
14. Creswell JW (2003) Research design qualitative, quantitative, and mixed methods approaches (2nd edn) Thousand Oaks CA: Sage.
15. Crowley A (1990) 'Integrating handicapped and chronically ill children into day care centres' Pediatric Nursing 16(1): 39-44.
16. Cuskelly M, Pulman L and Hayes A (1998) 'Parenting and employment decisions of parents with a preschool child with a disability' Journal of Intellectual&Developmental Disability 23(4): 319-332.
17. Damrosh SP and Perry LA (1989) 'Self reported adjustment, chronic sorrow, and coping with parents of children with Down syndrome' Nursing Research 38: 25-30.
18. De Laine M (1997) Ethnography theory and applications in health sciences Sydney: MacLennan&Petty/Elsevier.
19. Eakes G (1995) 'Chronic sorrow:The lived experience of parents of chronically mentally ill children' Archives of Psychiatric Nursing 9: 77-84.
20. Einam M and Cuskelly M (2002) 'Paid employment of mothers and fathers of an adult child with multiple disabilities' Journal of Intellectual Disability Research 46(2): 158-167.
21. Ellison GC and Rayman KM (1998) 'Exemplars' experience of self-managing Type 2 diabetes' Diabetes Educator 24: 325-330.
22. Fraley A (1986) 'Chronic sorrow in parents of premature children' Children's Health Care 15: 114-118.
23. Freedman RI, Litchfield LC and Warfield ME (1995) 'Balancing work and family: perspectives of parents of children with developmental disabilities' Families in Society 76(8): 507-514.
24. Gibson CH (1995) 'The process of empowerment in mothers of chronically ill children' Journal of Advanced Nursing 21(6): 1201-1210.
25. Hedov G, Anneren G and Wikblad K (2002) 'Swedish parents of children with Down's syndrome' Scandanavian Journal of Caring Sciences 16: 424-430.
26. Henderson A (2006) 'Boundaries around the "wellinformed" patient:The contribution of Schutz to inform nurses' interaction' Journal of Clinical Nursing 15: 4-10.
27. Hirst M (1985) 'Young adults with disabilities: Health, employment and financial costs for the family' Child Care Health Development 11: 291-307.
28. Hodges LC and Parker J (1987) 'Concerns of parents with diabetic children', Pediatric Nursing 13: 22-24, 68.
29. Iever CE and Drotar D (1996) 'Family and parental functioning in cystic fibrosis' Developmental and Behavioural Pediatrics 17: 48-55.
30. Isaacs D and Sewell JR (2003) 'Children with chronic conditions' Medical Journal of Australia 1: 235-236.
31. Jayne RL (1993) 'Self-regulation: Negotiating treatment regimens in insulin-dependent diabetes' Unpublished Doctoral Dissertation University of California. San Francisco CA.
32. Kilmartin C (1996) 'Are Australian Workplaces family friendly?' Family Matters 44: 36-37.
33. Kraft SK and Kraft LJ (1998) 'Chronic sorrow: parents' livid experience' Holistic Nursing Practice 13: 59-67.
34. Kurnat EL and Moore CM (1999) 'Family matters: The impact of a chronic condition on the families of children with asthma' Pediatric Nursing 25(3): 288-292.
35. Leiter V, Krauss MW, Anderson B and Wells N (2004) 'The consequences of caring: Effects of mothering a child with special needs' Journal of Family Issues 25(3): 379-403.
36. Lewis S, Kagan C and Heaton P (2000) 'Duel-earner parents with disabled children' Journal of Family Issues 21(8): 1031-1060.
37. Lindgren CL, Burke ML, Hainsworth ME and Eakes G (1992) 'Chronic sorrow:A life-span concept' Scholarly Inquiry for Nursing Practice 6: 27-40.
38. Lowes L and Lyne P (2000) 'Chronic sorrow in parents of children with newly diagnosed Diabetes: A review of the literature and discussion of the implications for nursing practice' Journal of Advanced Nursing 32(1): 41-48.
39. Mallow GE and Bechtel GA (1999) 'Chronic sorrow:The experience of parents with children who are developmentally disabled' Journal of Psychosocial Nursing 37: 31-35.
40. Meleski D (2002) 'Families with chronically ill children: A literature review examines approaches to helping them cope' American Journal of Nursing 102(5): 47-54.
41. Melnyk BM, Feinstein NF, Moldenhouer Z and Small L (2001) 'Coping in parents of children who are chronically ill: Strategies for assessment and intervention' Pediatric Nursing 27(6): 548-558.
42. Mertens DM (2005) Research and evaluation in education and psychology integrating diversity with quantitative, qualitative, and mixed methods (2nd edn) London, Thousand Oaks CA: Sage.
43. Minichiello V, Aroni R, Timewell E and Alexander l (1995) In Depth Interviewing (2nd edn) New York, Melbourne: Longman Cheshire.
44. Monterosso L, Kristjanson LJ, Phillips M, Macpherson R and Watson M (2005) Paediatric palliative and supportive care. Caring for life:The needs of children and families in Western Australia. Perth: Edith Cowan University. Retrieved from http://www.health.wa.gov.au/HRIT/publications/docs/Paediatric%20Palliative%20Care%20Report.pdf on 21 September 2006.
45. Noppe IC (2000) 'Beyond broken bonds and broken hearts:The bonding of theories of attachment and grief' Development Review 20: 514-38.
46. Norwington L (2000) 'Chronic sorrow in caregivers of school age children with sickle cell disease: A grounded theory approach' Issues in Comprehensive Pediatric Nursing 23: 141-154.
47. NUD*ISTVivo (2003). Qualitative Solutions and Research Pty Ltd. Nvivo [computer software].
48. Olshansky S (1962) 'Chronic sorrow:A response to having a mentally defective child' Social Casework 43: 191-193.
49. Padeliadu S (1998) 'Time demands and experienced stress in Greek mothers of children with down's syndrome' Journal of Intellectual Disability Research 42: 144-153.
50. Paterson BL and Sloan J (1994) 'A phenomenological study of the decision making experience of individuals with long-standing diabetes' Canadian Journal of Diabetes Care 18: 10-19.
51. Paterson BL, Russell C and Thorne S (2001) 'Critical analysis of everyday self-care decision making in chronic illness' Journal of Advanced Nursing 35(3); 335-341.
52. Pelchat D, Richard N, Bouuchard J-M, Perreault M, Saucier J-F, Berthiaume M and Bisson J (1999) 'Adaptation of parents in relation to their 6 month old infant's type of disability' Child Care Heath Dev 25: 377-397.
53. Philips M (1991) 'Chronic sorrow in mothers of chronically ill and disabled children' Issues in Comprehensive Pediatric Nursing 14: 111-120.
54. Robinson CA (1987) 'Chronic illness and the family: An overview', in:WM Wright&M Leahey (eds.) Families and Chronic Illness (pp. 33-54) Springhouse PA: Springhouse.
55. Sarantakos S (1998) Social Research (2nd edn) Melbourne: Macmillan.
56. Scornaienchi JM (2003) 'Chronic sorrow: one mother's experience with two children with lissencephaly' Journal of Pediatric Health Care 17(6): 290-94.
57. Silver EJ, Westbrook LE and Stein RE (1998) 'Relationship of parental psychological distress to consequences of chronic health conditions in children' Journal of Pediatric Psychology 23: 5-15.
58. Stevens M (1994) 'Parents coping with infants requiring home cardiorespiratory monitoring' Journal of Pediatric Nursing 9: 2-12.
59. Tanner JL, Dechert MP and Friedan I (1998) 'Growing up with a facial hemangioma: Parent and child coping and adaptation' Pediatrics 101: 446-452.
60. Thorne S, Paterson B and Russell C (2003) 'The structure of everyday self-care decision making in chronic illness' Qualitative Health Research 13(10): 1337-1351.
61. Thyen U, Kuhlthau K and Perrin JM (1999) 'Employment, child care, and mental health of mothers caring for children assisted by technology' Pediatrics 103(6): 1235-1242.
62. Titelman D and Psyk L (1991) 'Grief, guilt, and identification in siblings of schizophrenic individuals' Bulletin of the Menninger Clinic 55: 72-84.
63. Van den Heuval A (1993) 'Missing work to care for sick children' Family Matters 34(2): 52-55.
64. Van Manen M (1990) Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. New York: New York Press.
65. Vickers MH (2001)Work and Unseen Chronic Illness: SilentVoices. London and New York: Routledge.
66. Vickers MH (2005a) 'Bounded grief at work: Working and caring for children with chronic illness' Illness, Crisis and Loss 13 (3): 201-218.
67. Vickers MH (2005b) 'Working and caring for children with chronic illness: Stories of disconnection, cruelty and "Clayton's Support" ' The Review of Disability Studies:An International Journal 1(4): 37-49.
68. Vickers MH (2006) Working and Caring for a Child with Chronic Illness: Disconnected and Doing It All. London: Palgrave Macmillan.
69. Vickers MH, Parris MA and Bailey JG (2004) 'Working mothers of children with chronic illness: Narratives of working and caring' Australian Journal of Early Childhood 29(1): 39-44.
70. Vickers MH and Parris MA (2005) 'Towards ending the silence:Working women caring for children with chronic illness' Employee Responsibilities and Rights Journal 17(2): 91-108.
71. Watters JK and Biernacki P (1989) 'Targeted sampling: Options for the study of hidden populations' Social Problems 36(4): 416-430.
72. Winkler L, Wasow M and Hatfield E (1981) 'Chronic sorrow revisited: Parent vs. professional depiction of the adjustment of parents of mentally retarded children' American Journal of Orthopsychiatry 51: 63-70.