Living through the death of a child: A qualitative study of bereaved parents' experiences

International Journal of Nursing Studies

Volumn 48, Issue 11, 2011, Pages 1384-1392

  Price, Jayne ^a   Jordan, Joanne ^a   Prior, Lindsay ^a   Parkes, Jackie ^a  

^a QUEEN'S UNIVERSITY BELFAST   (United Kingdom)

Author keywords

Bereaved parents; Cancer; Dying child; End of life; Non malignant; Palliative care

Indexed keywords

ADOLESCENT; ARTICLE; BEREAVEMENT; CAUSE OF DEATH; CHILD; CROSS-SECTIONAL STUDY; FEMALE; HUMAN; INFANT; MALE; PARENT; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH;

ADOLESCENT; BEREAVEMENT; CAUSE OF DEATH; CHILD; CHILD, PRESCHOOL; CROSS-SECTIONAL STUDIES; FEMALE; HUMANS; INFANT; MALE; PARENTS; QUALITATIVE RESEARCH;

EID: 80054894100     PISSN: 00207489     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.ijnurstu.2011.05.006     Document Type: Article

References (60)

1. American Academy of Pediatrics (AAP) Palliative care for children. Pediatrics 2000, 106(2):351-357.
2. Association for Children's Palliative Care (ACT) A Guide to the Development of Children's Paediatric Services 2009, ACT, Bristol. 3rd edition.
3. Barbour R.S. Checklists for improving rigour in qualitative research: a case of the tail wagging the dog?. British Medical Journal 2001, 322:1115-1117.
4. Bowlby J. Processes of mourning. International Journal of Psychoanalysis 1961, 42:317-339.
5. Brody A.C., Simmons L.A. Family resiliency during childhood cancer. Journal of Pediatric Oncology Nursing 2007, 24:152-165.
6. Cobb S. Social support as a moderator of life stress. Psychosomatic Medicine 1976, 38(5):300-314.
7. Cohen S., Willis T.A. Stress, social support, and the buffering hypothesis. Psychological Bulletin 1985, 98:310-357.
8. Cooley C., Adeodu S., Aldred H., Beesley S., Leung A., Thacker L. Paediatric palliative care: a lack of research-based evidence. International Journal of Palliative Nursing 2000, 6(7):346-351.
9. Contro N., Larson J., Schofield S., Sourkes B., Cohen H. Family perspectives on the quality of pediatric palliative care. Archives of Pediatric Adolescent Medicine 2002, 156:14-19.
10. Contro N., Davies B., Larson J., Sourkes B. Away from home: experiences of Mexican American families in pediatric palliative care. Journal of Social Work and End of Life Palliative Care. 2010, 6(3-4):185-204.
11. Corbin J., Strauss A. A Nursing model for chronic illness management based upon the trajectory framework. Scholarly Inquiry for Nursing Practice: An International Journal 1991, 5(3):155-174.
12. Davies B., Deveau E., DeVeber B., Howell D., Martinson I., Papadatou D., Pask E., Stevens M. Experiences of mothers in five countries whose children died of cancer. Cancer Nursing 1998, 21(5):310-311.
13. Davies B., Contro N., Larson J., Widger K. Culturally-sensitive information-sharing in pediatric palliative care. Pediatrics 2010, 125(4):e859-e865. 10.1542/peds.2009-0722.
14. Dixon-Woods M., Shaw R.L., Agarwal S., Smith J.A. The problem of appraising qualitative research. Quality and Safety Health Care 2004, 13:223-225.
15. Dyregov K. Bereaved parents experiences of research participation. Social Science and Medicine 2004, 58(2):391-400.
16. Edwards K.E., Neville B.A., Cook E.F., Aldridge S.H., Dussel V., Wolfe J. Understanding of prognosis and goals of care among couples whose child die of cancer. Journal of Clinical Oncology 2008, 26(8):1310-1315.
17. Folkman S., Lazarus R. An analysis of coping in a middle aged community sample. Journal of Health and Social Behaviour 1980, 211:219-239.
18. Goldman A., Beardsmore S., Hunt J. Palliative care for children with cancer - home, hospital or hospice?. Archives of Disease in Childhood 1990, 65(6):641-643.
19. Gottlieb B.H. The development and application of a classification scheme of informal helping behaviours. Canadian Journal of Behavioural Science 1978, 10:105-115.
20. Graneheim U.H., Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 2004, 24:105-112.
21. Green J., Thorogood N. Qualitative Methods for Health Research 2009, Sage, London. 2nd edition.
22. Hayout I., Krulik T., Tamar R. A test of parenthood; dilemmas of parents of terminally ill adolescents. Cancer Nursing 1999, 22(1):71-79.
23. Hechter S., Poggenpoel M., Myburgh C. Life stories with a terminally ill child. Curatonis 2001, 24(2):54-61.
24. Hinds P.S., Oakes L., Furman W., Quargnenti A., Olson M.S., Foppiano P., Srivastava D.K. End of life decision making by adolescents, parents and health care professionals in pediatric oncology. Cancer Nursing 2001, 24(2):122-136.
25. House J.S. Work Stress and Social Support 1981, Addison-Wesley, Reading, MA.
26. Hughes E.C. Dilemmas and contradictions of status. American Journal of Sociology 1945, 50:353-359.
27. James L., Johnson B. The needs of parents in pediatric oncology patients during the palliative care phase. Journal of Pediatric Oncology Nursing 1997, 14(2):83-95.
28. Jefidoff A., Gasner R. Helping the parents of the dying child: an Israeli experience. Journal of Pediatric Nursing 1993, 8(6):413-415.
29. Kaplan B.H., Cassel J.C., Gore S. Social support and health. Medical Care 1977, 15:47-58.
30. Klass D. The deceased child in the psychic and social worlds of bereaved parents during the resolution of grief. Chapter 12. Continuing Bonds: New Understandings of Grief 1996, Taylor and Francis, London. D. Klass, P. Silverman, S. Nickman (Eds.).
31. Konrad S.C. Mothers' perspectives on qualities of care in their relationships with health care professionals: the influence of relational and communicative competencies. Journal of Social Work in End-of-life and Palliative Care 2008, 4(1):38-56.
32. Kreicbergs U., Valdimarsdottir U., Onelov E., Henter J., Steineck G. Talking about death with children who have severe cancer. New England Journal of Medicine 2004, 351:1175-1186.
33. Kreicbergs U., Valdimarsdottir U., Onelov E., Bjork O., Steineck G., Henter J.I. Care related distress: a nationwide study of parents who lost their child to cancer. Journal of Clinical Oncology 2005, 23(36):9152-9171.
34. MacDonald K., Greggans A. Dealing with chaos and complexity: the reality of interviewing children and families in their own homes. Journal of Clinical Nursing 2008, 17:3123-3130.
35. McCubbin M., Balling K., Possin P., Frierdich S., Bryne B. Family resiliency in childhood cancer. Family Relations 2002, 51:103-111.
36. McCulloch R., Comac M., Craig F. Paediatric palliative care: coming of age in oncology?. European Journal of Cancer 2008, 44(8):1139-1145.
37. McDonnell O., Lohan M., Hyde A., Porter S. Social Theory, Health and Healthcare 2009, Palgrave Macmillan, London.
38. Monterosso L., Kristjanson L. Supportive and palliative care needs of families of children who die from cancer: an Australian study. Palliative Medicine 2008, 22:59-69.
39. Northern Ireland Statistics and Research Agency (NISRA) Northern Ireland Census 2001 2001, available from: www.nisra.gov.uk (accessed 16 February 2011).
40. Parkes C.M. Bereavement: Studies in Grief in Adult Life 1970, Tavistock, London.
41. Patton M.Q. Qualitative Evaluation and Research Methods 1990, Newbury Park, CA, Sage.
42. Prior L The Social Organization of Death: Medical Discourse and Social Practices in Belfast 1989, Palgrave Macmillan.
43. Rodriguez A., King N. The lived experience of parenting a child with a life-limiting condition: a focus on the mental health realm. Palliative and Supportive Care 2009, 7:7-12.
44. Saiki-Craighill S. The personal development of mothers of terminal cancer patients: how Japanese women change through the experience of caring for and losing their children to cancer. Qualitative Health Research 2002, 12:769-779.
45. Spencer L., Ritchie J., Lewis J., Dillon L. Quality in Qualitative Evaluation: A Framework for Assessing Research Evidence 2003, Government Chief Social Researcher's Office, London, available from: www.strategy.gov.uk/downloads/su/qual/downloads/qqe_rep.pdf.
46. Steele R. Trajectory of certain death at an unknown time: children with neurodegenerative, life-threatening illnesses. Canadian Journal of Nursing Research 2000, 32(3):49-67.
47. Steele R., Davies B. Impact on parents when a child has a progressive, life-threatening illness. International Journal of Palliative Nursing 2006, 12(12):576-585.
48. Steele R., Bosma H., Fletcher Johnston M., Cadell S., Davies B., Siden H., Straatman L. Research priorities in pediatric palliative care: a Delphi study. Journal of Palliative Care 2008, 24(4):229-239.
49. Silverman D. Interpreting Qualitative Data: Methods for Analysing Talk, Text and Interaction 2006, Sage, London. 3rd edition.
50. Theun F. Social support after the loss of an infant child: A long term perspective. Scandinavian Journal of Psychology 1997, 38:103-110.
51. Theunissen J.M.J., Hoogerbrugge P.M., van Acterberg T., Prins J.B., Vernooij Dassen M.J.F.J., van den Ende C.H.M. Symptoms in the palliative phase of children with cancer. Pediatric Blood Cancer 2007, 49:160-165.
52. Thoitis P.A. Social support as coping assistance. Journal of Consulting and Clinical Psychology 1986, 54:416-423.
53. Thorne S. Data analysis in qualitative research. Evidence-Based Nursing 2000, 3:68-70.
54. Vickers J., Carlisle C. Choices and control; parental experiences in pediatric terminal home care. Journal of Pediatric Oncology Nursing 2000, 17(1):12-21.
55. Ware J., Raval H. A qualitative investigation of fathers' experiences of looking after a child with a life-limiting illness, in process and retrospect. Clinical child Psychology and Psychiatry 2007, 12(4):349-564.
56. Wheeler J. Parental bereavement: the crisis of meaning. Death Studies 2001, 25:51-66.
57. Widger K., Picot C. Parents' perceptions of the quality of pediatric and perinatal end-of-life care. Pediatric Nursing 2008, 34(1):53-58.
58. Wood F., Simpson S., Barnes E., Hain R Disease trajectories in pediatric palliative care. Palliative Medicine 2010, 24(8):796-806.
59. Woodgate R., Degner L. A substantive theory of keeping the spirit alive: the spirit within children with cancer and their families. Journal of Pediatric Oncology Nursing 2003, 20:103-119.
60. Worden W.J. Grief Counselling and Grief Therapy 1982, Tavistock Publications Ltd, London.