Experiences of parents of children surviving brain tumour: A happy ending and a rough beginning

European Journal of Cancer Care

Volumn 18, Issue 4, 2009, Pages 371-380

  Norberg, A Lindahl ^a   Steneby, S ^a  

^a KAROLINSKA UNIVERSITY HOSPITAL   (Sweden)

Author keywords

Brain tumours; Childhood cancer; Interview; Parents

Indexed keywords

ADAPTIVE BEHAVIOR; ADOLESCENT; ADULT; ARTICLE; BRAIN TUMOR; CHILD; CHILD PARENT RELATION; DAILY LIFE ACTIVITY; FAMILY; FEMALE; HUMAN; MALE; MENTAL STRESS; PARENT; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; SURVIVOR; SWEDEN;

ACTIVITIES OF DAILY LIVING; ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; BRAIN NEOPLASMS; CHILD; FAMILY; FEMALE; HUMANS; MALE; PARENT-CHILD RELATIONS; PARENTING; PARENTS; QUESTIONNAIRES; STRESS, PSYCHOLOGICAL; SURVIVORS; SWEDEN;

EID: 68149138461     PISSN: 09615423     EISSN: 13652354     Source Type: Journal    
DOI: 10.1111/j.1365-2354.2008.00976.x     Document Type: Article

References (42)

1. Anderson N.E. (2003) Late complications in childhood central nervous system tumour survivors. Current Opinion in Neurology 16, 677 683.
2. Barrera M., D'Agostino N.M., Gibson J., Gilbert T., Weksberg R. Malkin D. (2004) Predictors and mediators of psychological adjustment in mothers of children newly diagnosed with cancer. Psycho-Oncology 13, 630 641.
3. Bjork M., Wiebe T. Hallstrom I. (2005) Striving to survive: families' lived experiences when a child is diagnosed with cancer. Journal of Pediatric Oncology Nursing 22, 265 275.
4. Braga L.W., Da Paz A.C. Ylvisaker M. (2005) Direct clinician-delivered versus indirect family-supported rehabilitation of children with traumatic brain injury: a randomized controlled trial. Brain Injury 19, 819 831.
5. Brown R.T., Madan-Swain A. Lambert R. (2003) Posttraumatic stress symptoms in adolescent survivors of childhood cancer and their mothers. Journal of Traumatic Stress 16, 309 318.
6. Carpentieri S.C., Meyer E.A., Delaney B.L., Victoria M.L., Gannon B.K., Doyle J.M. Kieran M.W. (2003a) Psychosocial and behavioral functioning among pediatric brain tumor survivors. Journal of Neuro-Oncology 63, 279 287.
7. Carpentieri S.C., Waber D.P., Pomeroy S.L., Scott R.M., Goumnerova L.C., Kieran M.W., Billett A.L. Tarbell N.J. (2003b) Neuropsychological functioning after surgery in children treated for brain tumor. Neurosurgery 52, 1348 1356. discussion 1356-1357.
8. Duffey-Lind E.C., O'Holleran E., Healey M., Vettese M., Diller L. Park E.R. (2006) Transitioning to survivorship: a pilot study. Journal of Pediatric Oncology Nursing 23, 335 343.
9. Duffner P.K. (2004) Long-term effects of radiation therapy on cognitive and endocrine function in children with leukemia and brain tumors. Neurologist 10, 293 310.
10. Feeney T.J. Ylvisaker M. (2003) Context-sensitive behavioral supports for young children with TBI: short-term effects and long-term outcome. Journal of Head Trauma Rehabilitation 18, 33 51.
11. Fuemmeler B.F., Mullins L.L. Marx B.P. (2001) Posttraumatic stress and general distress among parents of children surviving a brain tumor. Children's Health Care 30, 169 182.
12. Green S.E. (2007 We're tired, not sad': Benefits and burdens of mothering a child with a disability. Social Science and Medicine 64, 150 163.
13. Grootenhuis M.A. Last B.F. (1997) Predictors of parental emotional adjustment to childhood cancer. Psycho-Oncology 6, 115 128.
14. Hayes N. (2000) Doing Psychological Research. Open University Press, Buckingham, UK.
15. Hillman K.A. (1997) Comparing child-rearing practices in parents of children with cancer and parents of healthy children. Journal of Pediatric Oncology Nursing 14, 53 67.
16. Hoekstra-Weebers J.E., Jaspers J.P., Kamps W.A. Klip E.C. (2001) Psychological adaptation and social support of parents of pediatric cancer patients: a prospective longitudinal study. Journal of Pediatric Psychology 26, 225 235.
17. Holmes T.H. Rahe R.H. (1967) The social readjustment rating scale. Journal of Psychosomatic Research 11, 213 218.
18. van't Hooft I.V., Andersson K., Bergman B., Sejersen T., Von Wendt L. Bartfai A. (2005) Beneficial effect from a cognitive training programme on children with acquired brain injuries demonstrated in a controlled study. Brain Injury 19, 511 518.
19. Jackson D. Mannix J. (2004) Giving voice to the burden of blame: a feminist study of mothers' experiences of mother blaming. International Journal of Nursing Practice 10, 150 158.
20. Kazak A.E. (1998) Posttraumatic distress in childhood cancer survivors and their parents. Medical and Pediatric Oncology 30 (Suppl. 1 60 68.
21. Kazak A.E., Alderfer M., Rourke M.T., Simms S., Streisand R. Grossman J.R. (2004) Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. Journal of Pediatric Psychology 29, 211 219.
22. Limond J. Leeke R. (2005) Practitioner review: cognitive rehabilitation for children with acquired brain injury. Journal of Child Psychology and Psychiatry and Allied Disciplines 46, 339 352.
23. Lindahl Norberg A. (2007) Burnout in parents of children surviving brain tumour. Journal of Clinical Psychology in Medical Settings 14, 130 137.
24. Lindahl Norberg A., Lindblad F. Boman K.K. (2005) Parental traumatic stress during and after paediatric cancer treatment. Acta Oncologica 44, 382 388.
25. Mabbott D.J., Spiegler B.J., Greenberg M.L., Rutka J.T., Hyder D.J. Bouffet E. (2005) Serial evaluation of academic and behavioral outcome after treatment with cranial radiation in childhood. Journal of Clinical Oncology 23, 2256 63.
26. Manne S.L., Duhamel K., Gallelli K., Sorgen K. Redd W.H. (1998) Posttraumatic stress disorder among mothers of pediatric cancer survivors: diagnosis, comorbidity, and utility of the PTSD checklist as a screening instrument. Journal of Pediatric Psychology 23, 357 366.
27. Miller G.E., Cohen S. Ritchey A.K. (2002) Chronic psychological stress and the regulation of pro-inflammatory cytokines: a glucocorticoid-resistance model. Health Psychology 21, 531 541.
28. Mulhern R.K. Butler R.W. (2004) Neurocognitive sequelae of childhood cancers and their treatment. Pediatric Rehabilitation 7, 1 14. discussion 15-16.
29. Mulhern R.K., Merchant T.E., Gajjar A., Reddick W.E. Kun L.E. (2004) Late neurocognitive sequelae in survivors of brain tumours in childhood. The Lancet Oncology 5, 399 408.
30. Mulhern R.K., Palmer S.L., Merchant T.E., Wallace D., Kocak M., Brouwers P., Krull K., Chintagumpala M., Stargatt R., Ashley D.M., Tyc V.L., Kun L., Boyett J. Gajjar A. (2005) Neurocognitive consequences of risk-adapted therapy for childhood medulloblastoma. Journal of Clinical Oncology 23, 5511 5519.
31. Patterson J.M., Holm K.E. Gurney J.G. (2004) The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors. Psycho-Oncology 13, 390 407.
32. Phipps S., Long A., Hudson M. Rai S.N. (2005) Symptoms of post-traumatic stress in children with cancer and their parents: effects of informant and time from diagnosis. Pediatric Blood and Cancer 45, 952 959.
33. Quin S. (2004) The long-term psychosocial effects of cancer diagnosis and treatment on children and their families. Social Work in Health Care 39, 129 149.
34. Radcliffe J., Bennett D., Kazak A.E., Foley B. Phillips P.C. (1996) Adjustment in childhood brain tumor survival: child, mother, and teacher report. Journal of Pediatric Psychology 21, 529 539.
35. Reimers T.S., Ehrenfels S., Mortensen E.L., Schmiegelow M., Sonderkaer S., Carstensen H., Schmiegelow K. Muller J. (2003) Cognitive deficits in long-term survivors of childhood brain tumors: identification of predictive factors. Medical and Pediatric Oncology 40, 26 34.
36. Strike P.C. Steptoe A. (2004) Psychosocial factors in the development of coronary artery disease. Progress in Cardiovascular Diseases 46, 337 347.
37. Stuber M.L., Christakis D.A., Houskamp B. Kazak A.E. (1996) Posttrauma symptoms in childhood leukemia survivors and their parents. Psychosomatics 37, 254 261.
38. Theorell T. Karasek R.A. (1996) Current issues relating to psychosocial job strain and cardiovascular disease research. Journal of Occupational Health Psychology 1, 9 26.
39. Toker S., Shirom A., Shapira I., Berliner S. Melamed S. (2005) The association between burnout, depression, anxiety, and inflammation biomarkers: c-reactive protein and fibrinogen in men and women. Journal of Occupational Health Psychology 10, 344 362.
40. Upton P. Eiser C. (2006) School experiences after treatment for a brain tumour. Child: Care, Health and Development 32, 9 17.
41. Van Dongen-Melman J.E.W.M., Van Zuuren F.J. Verhulst F.C. (1998) Experiences of parents of childhood cancer survivors: a qualitative analysis. Patient Education and Counseling 34, 185 200.
42. Woodgate R.L. (2006) Life is never the same: childhood cancer narratives. European Journal of Cancer Care English Language Edition) 15, 8 18.