Quality of life among parents of children with cancer or brain tumors: The impact of child characteristics and parental psychosocial factors

Quality of Life Research

Volumn 20, Issue 8, 2011, Pages 1261-1269

  Litzelman, Kristin ^a   Catrine, Kris ^a   Gangnon, Ronald ^a   Witt, Whitney P ^a  

^a UNIVERSITY OF WISCONSIN SCHOOL OF MEDICINE AND PUBLIC HEALTH   (United States)

Author keywords

Caregiver burden; Childhood cancer; Health; Health related quality of life; Mental health; Parental caregivers; Perceived stress; SF 12

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; BRAIN TUMOR; CAREGIVER; CHILD; CHILD PARENT RELATION; FAMILY HEALTH; FEMALE; HUMAN; INTERVIEW; MALE; MENTAL STRESS; MIDDLE AGED; NEOPLASM; PARENT; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; REGRESSION ANALYSIS; SICKNESS IMPACT PROFILE;

ADOLESCENT; ADULT; BRAIN NEOPLASMS; CAREGIVERS; CHILD; CHILD, PRESCHOOL; FAMILY HEALTH; FEMALE; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; NEOPLASMS; PARENT-CHILD RELATIONS; PARENTS; QUALITY OF LIFE; REGRESSION ANALYSIS; SICKNESS IMPACT PROFILE; STRESS, PSYCHOLOGICAL; YOUNG ADULT;

EID: 80053970027     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-011-9854-2     Document Type: Article

References (63)

1. Jemal, A., Siegel, R., Xu, J., & Ward, E. (2010). Cancer statistics, 2010. CA: A Cancer Journal for Clinicians.
2. Horner, M. J., Ries, L. A. G., Krapcho, M., Neyman, N., Aminou, R., Howlader, N., et al. (2009). SEER cancer statistics review, 1975-2006. Bethesda, MD: National Cancer Institute.
3. American Cancer Society. (2009). Cancer facts and figures 2009. Atlanta: American Cancer Society.
4. LL Robison DM Green M Hudson AT Meadows AC Mertens RJ Packer CA Sklar LC Strong Y Yasui LK Zeltzer 2005 Long-term outcomes of adult survivors of childhood cancer Cancer 104 11 Suppl 2557 2564 16247780 10.1002/cncr.21249 (Pubitemid 41691538)
5. KC Oeffinger MM Hudson 2004 Long-term complications following childhood and adolescent cancer: Foundations for providing risk-based health care for survivors CA: A Cancer Journal for Clinicians 54 4 208 236 10.3322/canjclin.54. 4.208 (Pubitemid 39136581)
6. WP Witt K Litzelman LE Wisk HA Spear K Catrine N Levin CA Gottlieb 2010 Stress-mediated quality of life outcomes in parents of childhood cancer and brain tumor survivors: A case-control study Quality of Life Research 19 7 995 1005 20473638 10.1007/s11136-010-9666-9
7. AF Klassen R Klaassen D Dix S Pritchard R Yanofsky M O'Donnell A Scott L Sung 2008 Impact of caring for a child with cancer on parents' health-related quality of life Journal of Clinical Oncology 26 36 5884 5889 19029424 10.1200/JCO.2007.15.2835
8. KE Robinson CA Gerhardt K Vannatta RB Noll 2009 Survivors of childhood cancer and comparison peers: The influence of early family factors on distress in emerging adulthood Journal of Family Psychology 23 1 23 31 19203156 10.1037/a0014199
9. KA Schultz KK Ness J Whitton C Recklitis B Zebrack LL Robison L Zeltzer AC Mertens 2007 Behavioral and social outcomes in adolescent survivors of childhood cancer: A report from the childhood cancer survivor study Journal of Clinical Oncology 25 24 3649 3656 17704415 10.1200/JCO.2006.09.2486 (Pubitemid 47372603)
10. B Zebrack 2008 Information and service needs for young adult cancer patients Supportive Care in Cancer 16 12 1353 1360 18386075 10.1007/s00520-008- 0435-z
11. BJ Zebrack LK Zeltzer J Whitton AC Mertens L Odom R Berkow LL Robison 2002 Psychological outcomes in long-term survivors of childhood leukemia, Hodgkin's disease, and non-Hodgkin's lymphoma: A report from the Childhood Cancer Survivor Study Pediatrics 110 1 Pt 1 42 52 12093945 10.1542/peds.110.1.42 (Pubitemid 34742639)
12. L Goldbeck 2001 Parental coping with the diagnosis of childhood cancer: Gender effects, dissimilarity within couples, and quality of life Psychooncology 10 4 325 335 11462231 10.1002/pon.530.abs 1:STN:280:DC%2BD3Mvht1Oguw%3D%3D (Pubitemid 32725122)
13. E Hoven M Anclair U Samuelsson P Kogner KK Boman 2008 The influence of pediatric cancer diagnosis and illness complication factors on parental distress Journal of Pediatric Hematology/oncology 30 11 807 814 18989157 10.1097/MPH.0b013e31818a9553
14. P Sloper 2000 Predictors of distress in parents of children with cancer: A prospective study Journal of Pediatric Psychology 25 2 79 91 10820946 10.1093/jpepsy/25.2.79 1:STN:280:DC%2BD3c3otVGrsw%3D%3D (Pubitemid 30112228)
15. K Boman A Lindahl O Bjork 2003 Disease-related distress in parents of children with cancer at various stages after the time of diagnosis Acta Oncologica 42 2 137 146 12801132 10.1080/02841860310004995 (Pubitemid 36570778)
16. Kazak, A. E. (1998). Posttraumatic distress in childhood cancer survivors and their parents. Medical and Pediatric Oncology 30(Suppl 1), 60-68.
17. JE Van Dongen-Melman JF Pruyn A De Groot HM Koot K Hahlen FC Verhulst 1995 Late psychosocial consequences for parents of children who survived cancer Journal of Pediatric Psychology 20 5 567 586 7500231 10.1093/jpepsy/20.5.567
18. BJ Wijnberg-Williams WA Kamps EC Klip JE Hoekstra-Weebers 2006 Psychological adjustment of parents of pediatric cancer patients revisited: Five years later Psychooncology 15 1 1 8 15880477 10.1002/pon.927 (Pubitemid 43141513)
19. LY Chien LH Lo CJ Chen YC Chen CC Chiang YMY Chao 2003 Quality of life among primary caregivers of Taiwanese children with brain tumor Cancer Nursing 26 4 305 311 12886121 10.1097/00002820-200308000-00009
20. JD Dockerty SM Williams R McGee DC Skegg 2000 Impact of childhood cancer on the mental health of parents Medical and Pediatric Oncology 35 5 475 483 11070480 10.1002/1096-911X(20001101)35:5<475::AID-MPO6>3.0.CO;2-U 1:STN:280:DC%2BD3M%2Fkt1Wisg%3D%3D
21. MA Grootenhuis BF Last 1997 Predictors of parental emotional adjustment to childhood cancer Psychooncology 6 2 115 128 9205969 10.1002/(SICI)1099- 1611(199706)6:2<115::AID-PON252>3.3.CO;2-4 1:STN:280:DyaK2szltVWqsw%3D%3D (Pubitemid 27288404)
22. CE Warren M Allen JW Haefner 1979 Conceptual frameworks and the philosophical foundations of general living systems theory Behavioral Science 24 5 296 310 508232 10.1002/bs.3830240503 1:STN:280:DyaL3c%2FmsVOisQ%3D%3D
23. JG Miller 1965 Living systems: Basic concepts Behavioral Science 10 3 193 237 5318173 10.1002/bs.3830100302 1:STN:280:DyaF28%2Fgtlertw%3D%3D
24. AZ Meir 1969 General system theory. Developments and perspectives for medicine and psychiatry Archives of General Psychiatry 21 3 302 310 5806031 1:STN:280:DyaF1M3nslaisA%3D%3D
25. Von Bertalanffy, L., & Rapoport, A. (1957). General systems: Yearbook of the society for the advancement of general systems theory (Vol. 1, p. vii, 162). Ann Arbor, MI: Braun-Brumfeld.
26. Pless, I. B., & Pinkerton, P. (1975). Chronic childhood disorder: Promoting patterns of adjustment. H. Kimpton.
27. Moos, R. H. (1977). Coping with physical illness (p. xii, 440). New York, NY: Plenum.
28. DA Major 2003 Utilizing role theory to help employed parents cope with children's chronic illness Health Education Research 18 1 45 57 12608683 10.1093/her/18.1.45 (Pubitemid 36227581)
29. RD Caplan S Cobb JR French Jr 1975 Relationships of cessation of smoking with job stress, personality, and social support Journal of Applied Psychology 60 2 211 219 1120772 10.1037/h0076471 1:STN:280:DyaE2M7jtlaktQ%3D%3D
30. JS House 1974 Occupational stress and coronary heart disease: A review and theoretical integration Journal of Health and Social Behavior 15 1 12 27 4618851 10.2307/2136922 1:STN:280:DyaE2M3ht1Whuw%3D%3D
31. W Witt T DeLeire 2009 A family perspective on population health: The case of child health and the family Wisconsin Medical Journal 108 5 240 245 19743754
32. R Brooks 1996 EuroQol: The current state of play Health Policy 37 1 53 72 10158943 10.1016/0168-8510(96)00822-6 1:STN:280:DyaK283otFKhsg%3D%3D (Pubitemid 26191458)
33. J Ware Jr M Kosinski SD Keller 1996 A 12-item short-form health survey: Construction of scales and preliminary tests of reliability and validity Medical Care 34 3 220 233 8628042 10.1097/00005650-199603000-00003 (Pubitemid 126433231)
34. JE Ware Jr 2000 SF-36 health survey update Spine 25 24 3130 3139 11124729 10.1097/00007632-200012150-00008 (Pubitemid 32042945)
35. HR Bird D Shaffer P Fisher MS Gould B Staghezza JY Chen CW Hoven 1993 The Columbia Impairment Scale (CIS): Pilot findings on a measure of global impairment for children and adolescents International Journal of Methods in Psychiatric Research 3 167 176
36. HR Bird H Andrews M Schwab-Stone S Goodman M Dulcan J Richters M Rubio-Stipec RE Moore PH Chiang CH Hoven G Canino P Fisher M Gould 1996 Global measure of impairment for epidemiologic and clinical use with children and adolescents Journal of Methods in Psychiatric Research 6 295 307 10.1002/(SICI)1234-988X(199612)6:4<295::AID-MPR173>3.3.CO;2-5
37. D Shaffer MS Gould J Brasic P Ambrosini P Fisher H Bird S Aluwahlia 1993 A children's global assessment scale (C-GAS) Archives of General Psychiatry 40 1228 1231
38. LE Carlson BC Thomas 2007 Development of the calgary symptoms of stress inventory (c-sosi) International Journal of Behavioral Medicine 14 4 249 256 18001241 10.1007/BF03003000 (Pubitemid 350250398)
39. S Cohen T Kamarck R Mermelstein 1983 A global measure of perceived stress Journal of Health and Social Behavior 24 4 385 396 6668417 10.2307/2136404 1:STN:280:DyaL2c7js12iug%3D%3D
40. ES Williams TR Konrad M Linzer J McMurray DE Pathman M Gerrity MD Schwartz WE Scheckler J Van Kirk E Rhodes J Douglas 1999 Refining the measurement of physician job satisfaction: Results from the Physician Worklife Survey. SGIM Career Satisfaction Study Group. Society of General Internal Medicine Medical Care 37 11 1140 1154 10549616 10.1097/00005650-199911000-00006 1:STN:280:DC%2BD3c%2FhsFyjuw%3D%3D
41. CW Given B Given M Stommel C Collins S King S Franklin 1992 The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments Research in Nursing and Health 15 4 271 283 1386680 10.1002/nur.4770150406 1:STN:280:DyaK38zlsl2ltg%3D%3D
42. W Schaufeli D van Dierendonck 1993 The construct validity of two burnout measures Journal of Organizational Behavior 14 631 647 10.1002/job.4030140703
43. LK George LP Gwyther 1986 Caregiver well-being: A multidimensional examination of family caregivers of demented adults Gerontologist 26 3 253 259 3721232 10.1093/geront/26.3.253 1:STN:280:DyaL283kvVOnsA%3D%3D
44. Bouma, J., Ranchor, A., Sanderman, R., & Van Sonderen, E. (1995). Assessment of symptoms of depression by means of the CES-D: A manual. Groningen: Northern Centre for Healthcare Research, University of Groningen.
45. C Nijboer M Triemstra R Tempelaar R Sanderman GAM van den Bos 1999 Measuring both negative and positive reactions to giving care to cancer patients: Psychometric qualities of the Caregiver Reaction Assessment (CRA) Social Science and Medicine 48 9 1259 1269 10220024 10.1016/S0277-9536(98)00426- 2 1:STN:280:DyaK1M3jsFCgsg%3D%3D (Pubitemid 29148393)
46. DJ Buysse CF Reynolds 3rd TH Monk SR Berman DJ Kupfer 1989 The Pittsburgh Sleep Quality Index: A new instrument for psychiatric practice and research Psychiatry Research 28 2 193 213 2748771 10.1016/0165-1781(89)90047-4 1:STN:280:DyaL1Mzhs1Wmsg%3D%3D (Pubitemid 19144991)
47. SL Beck AL Schwartz G Towsley W Dudley A Barsevick 2004 Psychometric evaluation of the Pittsburgh sleep quality index in cancer patients Journal of Pain and Symptom Management 27 2 140 148 15157038 10.1016/j.jpainsymman.2003.12. 002 (Pubitemid 38221072)
48. JS Carpenter MA Andrykowski 1998 Psychometric evaluation of the Pittsburgh Sleep Quality Index Journal of Psychosomatic Research 45 1 Spec No 5 13 9720850 10.1016/S0022-3999(97)00298-5 1:STN:280:DyaK1czosFyjtg%3D%3D (Pubitemid 28339935)
49. PA Carter BL Chang 2000 Sleep and depression in cancer caregivers Cancer Nursing 23 6 410 415 11128119 10.1097/00002820-200012000-00002 1:STN:280:DC%2BD3M%2FosVyjsg%3D%3D
50. S Wilcox AC King 1999 Sleep complaints in older women who are family caregivers The Journals of Gerontology: Series B: Psychological Sciences Social Sciences 54 3 P189 P198 10.1093/geronb/54B.3.P189 1:STN:280:DyaK1M3ptFahsg%3D%3D
51. KY Liang SL Zeger 1993 Regression analysis for correlated data Annual Review of Public Health 14 43 68 8323597 10.1146/annurev.pu.14.050193.000355 1:STN:280:DyaK3szht1ertw%3D%3D (Pubitemid 23161711)
52. SL Zeger KY Liang 1986 Longitudinal data analysis for discrete and continuous outcomes Biometrics 42 1 121 130 3719049 10.2307/2531248 1:STN:280:DyaL283ktlGmuw%3D%3D
53. RM Baron DA Kenny 1986 The moderator-mediator variable distinction in social psychological research: Conceptual, strategic, and statistical considerations Journal of Personality and Social Psychology 51 6 1173 1182 3806354 10.1037/0022-3514.51.6.1173 1:STN:280:DyaL2s7ht1SrsQ%3D%3D
54. RD Canning ES Harris KJ Kelleher 1996 Factors predicting distress among caregivers to children with chronic medical conditions Journal of Pediatric Psychology 21 5 735 749 8936900 10.1093/jpepsy/21.5.735 1:STN:280: DyaK2s%2FptFWltw%3D%3D (Pubitemid 26361906)
55. S Ozono T Saeki T Mantani A Ogata H Okamura S Yamawaki 2007 Factors related to posttraumatic stress in adolescent survivors of childhood cancer and their parents Supportive Care in Cancer 15 3 309 317 17021857 10.1007/s00520-006-0139-1 (Pubitemid 46295211)
56. R Alloway P Bebbington 1987 The buffer theory of social support-a review of the literature Psychological Medicine 17 1 91 3575581 10.1017/ S0033291700013015 1:STN:280:DyaL2s3gsVyjtA%3D%3D
57. S Cohen TA Wills 1985 Stress, social support, and the buffering hypothesis Psychological Bulletin 98 2 310 357 3901065 10.1037/0033-2909.98.2. 310 1:STN:280:DyaL28%2FhsleqsQ%3D%3D
58. N Arora C McHorney 2000 Patient preferences for medical decision making: Who really wants to participate? Medical Care 38 3 335 10718358 10.1097/00005650-200003000-00010 1:STN:280:DC%2BD3c7otFartA%3D%3D
59. JV Lavigne J Faier-Routman 1993 Correlates of psychological adjustment to pediatric physical disorders: A meta-analytic review and comparison with existing models Journal of Developmental and Behavioral Pediatrics 14 2 117 123 8473527 10.1097/00004703-199304000-00007 1:STN:280:DyaK3s3jt1eiuw%3D%3D
60. JL Wagner JM Chaney KA Hommel MC Page LL Mullins MM White JN Jarvis 2003 The influence of parental distress on child depressive symptoms in juvenile rheumatic diseases: The moderating effect of illness intrusiveness Journal of Pediatric Psychology 28 7 453 462 12968037 10.1093/jpepsy/jsg036 (Pubitemid 37169708)
61. L Dahlquist D Czyzewski C Jones 1996 Parents of children with cancer: A longitudinal study of emotional distress, coping style, and marital adjustment two and twenty months after diagnosis Journal of Pediatric Psychology 21 4 541 8863463 10.1093/jpepsy/21.4.541 1:STN:280:DyaK2s%2Fhs1ygtQ%3D%3D (Pubitemid 26256784)
62. R Felder Puig A Formann A Mildner W Bretschneider B Bucher R Windhager A Zoubek S Puig R Topf 1998 Quality of life and psychosocial adjustment of young patients after treatment of bone cancer Cancer 83 1 69 75 9655295 10.1002/(SICI)1097-0142(19980701)83:1<69::AID-CNCR10>3.0.CO;2-A 1:STN:280:DyaK1czhvVSjsw%3D%3D (Pubitemid 28299631)
63. K Russell M Hudson A Long S Phipps 2006 Assessment of health related quality of life in children with cancer Cancer 106 10 2267 2274 16604563 10.1002/cncr.21871 (Pubitemid 43673250)