Providing care to a child with cancer: A longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis

Psycho-Oncology

Volumn 24, Issue 3, 2015, Pages 318-324

  Sulkers, Esther ^a,b   Tissing, Wim J E ^b   Brinksma, Aeltsje ^a,b   Roodbol, Petrie F ^a   Kamps, Willem A ^b   Stewart, Roy E ^a   Sanderman, Robbert ^a,c   Fleer, Joke ^a  

^a UNIVERSITY MEDICAL CENTER GRONINGEN   (Netherlands)

^b UNIVERSITY OF GRONINGEN   (Netherlands)

^c UNIVERSITY OF TWENTE   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ANXIETY; ARTICLE; CANCER DIAGNOSIS; CANCER PATIENT; CAREGIVER; CAREGIVER BURDEN; CHILD; CHILD CARE; CHILDHOOD CANCER; DEPRESSION; DISEASE COURSE; EMOTIONAL STRESS; FEMALE; HEALTH; HUMAN; INFANT; INTERPERSONAL COMMUNICATION; LONGITUDINAL STUDY; MAJOR CLINICAL STUDY; MALE; MEDICAL CARE; MOTHER; MULTILEVEL ANALYSIS; NEWBORN; ONLY CHILD; PREDICTOR VARIABLE; ROLE PLAYING; SELF REPORT; SINGLE (MARITAL STATUS); SINGLE PARENT; ADAPTIVE BEHAVIOR; HEALTH STATUS; MARRIAGE; MENTAL STRESS; NEOPLASMS; PREDICTIVE VALUE; PRESCHOOL CHILD; PSYCHOLOGY; QUALITY OF LIFE; QUESTIONNAIRE; SELF CONCEPT; SOCIAL SUPPORT; SOCIOECONOMICS; TIME;

ADAPTATION, PSYCHOLOGICAL; ANXIETY; CAREGIVERS; CHILD; CHILD, PRESCHOOL; DEPRESSION; FEMALE; HEALTH STATUS; HUMANS; LONGITUDINAL STUDIES; MALE; MARITAL STATUS; MOTHERS; NEOPLASMS; PREDICTIVE VALUE OF TESTS; QUALITY OF LIFE; QUESTIONNAIRES; SELF CONCEPT; SOCIAL SUPPORT; SOCIOECONOMIC FACTORS; STRESS, PSYCHOLOGICAL; TIME FACTORS;

EID: 84929313144     PISSN: 10579249     EISSN: 10991611     Source Type: Journal    
DOI: 10.1002/pon.3652     Document Type: Article

References (44)

1. Allen R, Newman SP, Souhami RL. Anxiety and depression in adolescent cancer: Findings in patients and parents at the time of diagnosis. Eur J Cancer 1997;33:1250-1255.
2. Yeh CH. Gender differences of parental distress in children with cancer. J Adv Nurs 2002;38:598-606.
3. Pai ALH, Lewandowski A, Youngstrom E, Greenley RN, Drotar D, Peterson CC. A meta-analytic review of the influence of pediatric cancer on parent and family functioning. J Fam Psychol 2007;21:407-415. DOI: 10.1037/0893-3200.21.3.407.
4. Vrijmoet-Wiersma CMJ, van Klink JM, Kolk AM, Koopman HM, Ball LM, Maarten Egeler R. Assessment of parental psychological stress in pediatric cancer: a review. J Pediatr Psychol 2008;33:694-706. DOI: 10.1093/ jpepsy/jsn007.
5. Best M, Streisand R, Catania L, Kazak AE. Parental distress during pediatric leukemia and posttraumatic stress symptoms (PTSS) after treatment ends. J Pediatr Psychol 2001;26:299-307.
6. Kazak A, Cant M, Jensen M, et al. Identifying psychosocial risk indicative of subsequent resource use in families of newly diagnosed pediatric oncology patients. J Clin Oncol 2003;21:3220-3225. DOI: 10.1200/ JCO.2003.12.156.
7. Klassen AF, Raina P, Reineking S, Dix D, Pritchard S, O'Donnell M. Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being. Support Care Cancer 2007;15:807-818. DOI: 10.1007/ s00520-007-0243-x.
8. Hoven E, Anclair M, Samuelsson U, Kogner P, Boman KK. The Influence of Pediatric Cancer Diagnosis and Illness Complication Factors on Parental Distress. J Pediatr Hematol Oncol 2008;30:807-814. DOI: 10.1097/MPH.0b013e31818a9553.
9. Raina P, O'Donnell M, Schwellnus H, et al. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr 2004;14:1-13.
10. Granek L, Rosenberg-Yunger ZR, Dix D, et al. Caregiving, single parents and cumulative stresses when caring for a child with cancer. Child Care Health Dev 2012; DOI: 10.1111/cch.12008.
11. Vrijmoet-Wiersma CMJ, Hoekstra-Weebers JEHM, de Peinder WMGM, et al. Psychometric qualities of the Dutch version of the Pediatric Inventory for Parents (PIP): a multicenter study. Psycho-Oncology 2010;19: 368-375. DOI: 10.1002/pon.1571.
12. Streisand R, Braniecki S, Tercyak KP, Kazak AE. Childhood illness-related parenting stress: The pediatric inventory for parents. J Pediatr Psychol 2001;26:155-162.
13. Patterson J, Holm K, Gurney J. The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors. Psycho-Oncology 2004;13:390-407.DOI: 10.1002/pon.761.
14. Bjork M, Wiebe T, Hallstrom I. An everyday struggle-Swedish families' lived experiences during a child's cancer treatment. J Pediatr Nurs 2009;24:423-432. DOI: 10.1016/j. pedn.2008.01.082.
15. Flury M, Caflisch U, Ullmann-Bremi A, Spichiger E. Experiences of parents with caring for their child after a cancer diagnosis. J Pediatr Oncol Nurs 2011;28:143-153. DOI: 10.1177/1043454210378015.
16. Stenberg U, Ruland CM, Miaskowski C. Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology 2010;19:1013-1025. DOI: 10.1002/pon.1670.
17. Rodriguez EM, Dunn MJ, Zuckerman T, Vannatta K, Gerhardt CA, Compas BE. Cancer-Related Sources of Stress for Children With Cancer and Their Parents. J Pediatr Psychol 2012;37:185-197. DOI: 10.1093/ jpepsy/jsr054.
18. Klassen AF, Raina P, McIntosh C, et al. Parents of children with cancer: which factors explain differences in health-related quality of life. Int J Cancer 2011;129:1190-1198. DOI: 10.1002/ijc.25737.
19. Aneshensel CS, Pearlin LI, Mullan JT, Zarit SH, Whitlatch CJ. Profiles in Caregiving: The Unexpected Career, Academic Press: San Diego, CA US, 1995.
20. Steele R, Long A, Reddy K, LuhrM, Phipps S. Changes in maternal distress and child-rearing strategies across treatment for pediatric cancer. J Pediatr Psychol 2003;28:447-452. DOI: 10.1093/jpepsy/jsg035.
21. Svavarsdottir E. Caring for a child with cancer: a longitudinal perspective. J Adv Nurs 2005;50:153-161. DOI: 10.1111/j.1365-2648.2005.03374.x.
22. Pinquart M, Sorensen S. Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis RID B-1070-2008. J Gerontol B Psychol Sci Soc Sci 2006;61:33-45.
23. Pelchat D, Lefebvre H, Levert M. Gender differences and simililarities in the experience of parenting a child with a health problem: current state of knowledge. J Child Health Care 2007;11:112-131. DOI: 10.1177/ 1367493507076064.
24. Radloff LS. The CES-D Scale: A self-report depression scale for research in the general population. Appl Psychol Meas 1977;1:385-401. DOI: 10.1177/014662167700100306.
25. Marteau TM, Bekker H. The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). Br J Clin Psychol 1992;31:301-306. DOI: 10.1111/j.2044-8260.1992.tb00997.x.
26. Spielberger CD, Gorschuch RL, Lushene RE. STAI Manual for the STATE-Trait Anxiety Inventory, Consulting Psychologists Press: Palo Alto, CA, 1970.
27. Kvaal K, Ulstein I, Nordhus IH, Engedal K. The Spielberger State-Trait Anxiety Inventory (STAI): The state scale in detecting mental disorders in geriatric patients. Int J Geriatr Psychiatry 2005;20:629-634. DOI: 10.1002/ gps.1330.
28. Dennis C, Coghlan M, Vigod S. Can we identify mothers at-risk for postpartum anxiety in the immediate postpartum period using the state-trait anxiety inventory? J Affect Disord 2013;150:1217-1220. DOI: 10.1016/j. jad.2013.05.049.
29. Stewart AL, Hays RD, Ware JE. The MOS short-form general health survey: Reliability and validity in a patient population. Med Care 1988;26:724-735. DOI: 10.1097/00005650-198807000-00007.
30. Kazak AE, Hocking MC, Ittenbach RF, et al. A revision of the intensity of treatment rating scale: Classifying the intensity of pediatric cancer treatment. Pediatr Blood Cancer 2011; DOI: 10.1002/pbc.23320.
31. Hox JJ. In Modeling Longitudinal and Multilevel Data: Practical Issues, Applied Approaches, and Specific Examples, Little TD, Schnabel KU and Baumert J (eds), Multilevel analyses of grouped and longitudinal data, Lawrence Erlbaum Associates Publishers: Mahwah, NJ US, 2000;15-32:269-281.
32. Singer JD and Willett JB. Applied Longitudinal Data Analysis: Modeling Change and Event Occurrence, Oxford University Press: New York, NY US, 2003.
33. Guilfoyle SM, Denson LA, Baldassano RN, Hommel KA. Paediatric parenting stress in inflammatory bowel disease: Application of the Pediatric Inventory for Parents. Child Care Health Dev 2012;38:273-279. DOI: 10.1111/j.1365-2214.2010.01200.x.
34. Clarke-Steffen L. A model of the family transition to living with childhood cancer. Cancer Pract 1993;1:285-292.
35. McCubbin M, Balling K, Possin P, Frierdich S, Bryne B. Family resiliency in childhood cancer. Fam Relat 2002;51:103-111. DOI: 10.1111/j.1741-3729.2002.00103.x.
36. Woodgate RL, Degner LF. A substantive theory of Keeping the Spirit Alive: the Spirit Within children with cancer and their families. J Pediatr Oncol Nurs 2003;20:103-119. DOI: 10.1053/jpon.2003.75.
37. G Travis. Chronic Illness in Children: Its Impact on Child and Family, Stanford U Press: Palo Alto, CA US, 1976.
38. Wakefield CE, McLoone JK, Butow P, Lenthen K, Cohn RJ. Parental Adjustment to the Completion of Their Child's Cancer Treatment. Pediatr Blood Cancer 2011; 56:524-531. DOI: 10.1002/pbc.22725.
39. Stein RE, Jessop DJ. What diagnosis does not tell: The case for a noncategorical approach to chronic illness in childhood. Soc Sci Med 1989;29:769-778. DOI: 10.1016/0277-9536 (89)90157-3.
40. Pinquart M, Sörensen S. Correlates of physical health of informal caregivers: A metaanalysis. J Gerontol B Psychol Sci Soc Sci 2007;62B:126-137.
41. Klassen AF, Gulati S, Granek L, et al. Understanding the health impact of caregiving: a qualitative study of immigrant parents and single parents of children with cancer. Qual Life Res 2012;21:1595-1605. DOI: 10.1007/ s11136-011-0072-8.
42. Lazarus RS. In The Praeger Handbook on Stress and Coping (vol1), Monat A, Lazarus RS and Reevy G (eds), Stress and emotion: A new synthesis, Praeger Publishers/Greenwood Publishing Group: Westport, CT US, 2007;33-51.
43. Kazak AE. Pediatric Psychosocial Preventative Health Model (PPPHM): Research, practice, and collaboration in pediatric family systems medicine. Fam Syst Health 2006;24:381-395. DOI: 10.1037/1091-7527.24.4.381.
44. Kazak AE, Barakat LP, Hwang W, et al. Association of psychosocial risk screening in pediatric cancer with psychosocial services provided. Psycho-Oncology 2011;20:715-723. DOI: 10.1002/pon.1972.