Children and adolescents who have survived childhood cancer are vulnerable to late
effects of their disease and treatment experience, including both physical and
psychological sequelae. The neurodevelopmental (ND) sequelae (e.g., difficulties
with attention, memory, information processing, and other executive functions) faced
by children surviving central nervous system (CNS) cancers or CNS treatments can
have a range of effects on their psychological adjustment and quality of life as
they reintegrate into school and social settings. Survivors facing such difficulties
may be influenced by their family environment, and these struggles may in turn
impact the perceived burden of their parents and family system, suggesting a
bidirectional framework for understanding the impact of ND late effects within the
family. The current study summarizes the following: Findings of family outcomes in
children with ND late effects of cancer treatment; evaluation of methodological and
measurement issues; the importance of examining bidirectional family–child
influences; and implications for future survivorship research and clinical care
addressing the role of ND late effects from a systems perspective.
Alderfer, M.A.
,
Labay, L.E.
, &
Kazak,A.E.
(2003).
Does posttraumatic stress apply to siblings of childhood cancer survivors?Journal of Pediatric Psychology, 28,
281–286
.
2.
American Cancer Society
. (2003). Cancer facts and figures.
Atlanta, GA: American Cancer Society
.
3.
Armstrong, F.D.
,
Blumberg, M.J.
, &
Toledano, S.R.
(1999).
Neurobehavioral issues in childhood cancer
. School Psychology Review, 28,
194–203
.
4.
Armstrong, F.D.
, &
Horn, M.
(1995).
Educational issues in childhood cancer
. School Psychology Quarterly, 10,
292–304
.
5.
Armstrong, F.D.
, &
Mulhern, R.K.
(1999). Cognitive consequences of acute lymphoblastic
leukemia and brain tumors in children. In
R.T. Brown
(Ed.), Cognitive aspects of chronic illness in children (pp.
47–77).
New York: Guilford
.
6.
Armstrong, F.D.
,
Toledano, S.R.
,
Miloslavich, K.
,
Lackman-Zeman, L.
,
Levy, J.D.
,
Gay, C.L.
,
Schuman,W.B.
, &
Fishkin, P.E.
(1999).
The Miami Pediatric Quality of Life Questionnaire: Parent scale
. International Journal of Cancer, 12
(Supplement),
11–17
.
7.
Barakat, L.P.
,
Hetzke, J.D.
,
Foley, B.
,
Carey, M.E.
,
Gyato, K.
, &
Phillips, P.C.
(2003).
Evaluation of a social-skills training group intervention with children
treated for brain tumors: A pilot study
. Journal of Pediatric Psychology, 28,
299–307
.
8.
Brougham, M.F.
,
Kelnar, C.J.
, &
Wallace,W.H.
(2002).
The late endocrine effects of childhood cancer treatment
. Pediatric Rehabilitation, 5,
191–201
.
9.
Brown, R.T.
,
Madan-Swain,A.
,
Walco, G.A.
,
Cherrick, I.
,
Ievers, C.E.
,
Conte, P.M.
,
Vega, R.
,
Bell, B.
, &
Lauer, S.J.
(1998).
Cognitive and academic late effects among children previously treated for
acute lymphocytic leukemia receiving chemotherapy as CNS prophylaxis
. Journal of Pediatric Psychology, 23,
333–340
.
10.
Brown, R.T.
,
Sawyer, M.B.
,
Antoniou, G.
,
Toogood, I.
,
Rice, M.
,
Thompson, N.
, &
Madan-Swain,A.
(1996).
A 3-year follow-up of the intellectual and academic functioning of children
receiving central nervous system prophylactic chemotherapy for leukemia
. Journal of Developmental and Behavioral Pediatrics,
17,
392–398
.
11.
Butler, R.W.
, &
Copeland, D.R.
(2002).
Attentional processes and their remediation in children treated for cancer:
A literature review and the development of a therapeutic approach
. Journal of the International Neuropsychological Society,
8,
115–124
.
12.
Carlson-Green, B.
,
Morris, R.D.
, &
Krawiecki, N.
(1995).
Family and illness predictors of outcome in pediatric brain tumors
. Journal of Pediatric Psychology, 20,
769–784
.
Greenberg, H.S.
,
Kazak,A.E.
, &
Meadows,A.T.
(1989).
Psychologic functioning in 8-to 16-year-old cancer survivors and their parents
. Journal of Pediatrics, 114,
488–493
.
15.
Katz, E.R.
,
Varni, J.W.
,
Rubenstein, C.L.
,
Blew,A.
, &
Hubert, N.
(1992).
Teacher, parent, and child evaluative ratings of a school reintegration
intervention for children with newly diagnosed cancer
. Children's Health Care, 21,
69–75
.
16.
Kazak,A.E.
(1994). Implications of survival: Pediatric oncology
patients and their families. In
D.J. Bearison
&
R.K. Mulhern
(Eds.), Pediatric psychooncology: Psychological perspectives on children
with cancer (pp. 171–192).
New York: Oxford University Press
.
17.
Kazak,A.E.
,
Barakat, L.
,
Meeske, K.
,
Christakis, D.
,
Meadows,A.
,
Casey, R.
,
Penati, B.
, &
Stuber, M.
(1997).
Posttraumatic stress, family functioning, and social support in survivors
of childhood leukemia and their mothers and fathers
. Journal of Consulting and Clinical Psychology, 65,
120–129
.
18.
Kazak,A.E.
,
Cant, M.C.
,
Jensen, M.M.
,
McSherry, M.
,
Rourke, M.
,
Hwang,W.
,
Alderfer, M.
,
Beele, D.
,
Simms, S.
, &
Lange, B.J.
(2003).
Identifying psychosocial risk indicative of subsequent resource use in
families of newly diagnosed pediatric oncology patients
. Journal of Clinical Oncology, 21,
3220–3225
.
19.
Kazak,A.E.
,
Christakis, D.
,
Alderfer, M.
, &
Coiro, M.
(1994).
Young adolescent cancer survivors and their parents: Adjustment, learning
problems, and gender
. Journal of Family Psychology, 8,
74–84
.
20.
Kazak,A.E.
, &
Meadows,A.T.
(1989).
Families of young adolescents who have survived cancer: Social-emotional
adjustment, adaptability, and social support
. Journal of Pediatric Psychology, 14,
175–191
.
21.
Kazak,A.E.
,
Simms, S.
,
Barakat, L.
,
Hobbie,W.
,
Foley, B.
,
Golomb,V.
, &
Best, M.
(1999).
Surviving cancer competently intervention program (SCCIP): A
cognitive-behavioral and family therapy intervention for adolescent
survivors of childhood cancer and their families
. Family Process, 38,
175–191
.
22.
Kupst, M.
,
Natta, M.B.
,
Richardson, C.C.
,
Schulman, J.L.
,
Lavigne, J.V.
, &
Das, L.
(1995).
Family coping with pediatric leukemia: Ten years after treatment
. Journal of Pediatric Psychology, 20,
601–617
.
23.
Levin Newby,W.
,
Brown, R.T.
,
Pawletko,T.M.
,
Gold, S.H.
, &
Whitt, J.K.
(2000).
Social skills and psychological adjustment of child and adolescent cancer survivors
. Psycho-Oncology, 9,
113–126
.
24.
McLean,W.E.
,
Foley, G.V.
,
Ruccione, K.
, &
Sklar, C.
(1996).
Transitions in the care of adolescent and young adult survivors of
childhood cancer
. Cancer, 78,
1340–1344
.
25.
Mitby, P.A.
,
Robison, L.L.
,
Whitton, J.A.
,
Zevon, M.A.
,
Gibbs, I.C.
,
Tersak, J.M.
,
Meadows, A.T.
,
Stovall, M.
,
Zeltzer, L.K.
, &
Mertens,A.C.
(2003).
Utilization of special education services and educational attainment among
long-term survivors of childhood cancer
. Cancer, 97,
1115–1126
.
26.
Moleski, M.
(2000).
Neuropsychological, neuroanatomical, and neurophysiological consequences of
CNS chemotherapy for acute lymphoblastic leukemia
. Archives of Clinical Neuropsychology, 15,
603–630
.
27.
Mulhern, R.K.
(1994). Neuropsychological late effects. In
D.J. Bearison
&
R.K. Mulhern
(Eds.), Pediatric psychooncology: Psychological perspectives on children
with cancer(pp. 99–121).
New York: Oxford University Press
.
28.
Mulhern, R.K.
,
Kovnar, E.
,
Langston, J.
,
Carter, M.
,
Fairclough, D.
,
Leigh, L.
, &
Kun, L.E.
(1992).
Long-term survivors of leukemia treated in infancy: Factors associated with
neuropsychologic status
. Journal of Clinical Oncology, 10,
1095–1102
.
29.
Mulhern, R.K.
,
Palmer, S.L.
,
Reddick,W.E.
,
Glass, J.O.
,
Kun, L.E.
,
Taylor, J.
,
Langston, J.
, &
Gajjar,A.
(2001).
Risks of young age for selected neurocognitive deficits in medulloblastoma
are associated with white matter loss
. Journal of Clinical Oncology, 19,
472–479
.
30.
Phipps, S.
, &
Mulhern, R.K.
(1995).
Family cohesion and expressiveness promote resilience to the stress of
pediatric bone marrow transplant: A preliminary report
. Journal of Developmental and Behavioral Pediatrics,
16,
257–263
.
31.
Prevatt, F.F.
,
Heffer, R.W.
, &
Lowe, P.A.
(2000).
A review of school reintegration programs for children with cancer
. Journal of School Psychology, 38,
447–467
.
32.
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
.
33.
Rait, D.S.
,
Ostroff, J.S.
,
Smith, K.
,
Cella, D.F.
,
Tan, C.
, &
Lesko, L.M.
(1992).
Lives in a balance: Perceived family functioning and the psychosocial
adjustment of adolescent cancer survivors
. Family Process, 31,
383–397
.
34.
Ris, M.D.
, &
Noll, R.B.
(1994).
Long-term neurobehavioral outcome in pediatric brain tumor patients: Review
and methodological critique
. Journal of Clinical and Experimental Neuropsychology,
16,
21–42
.
35.
Scherbring, M.
(2002).
Effect of caregiver perception of preparedness on burden in an oncology population
. Oncology Nursing Forum, 29,
E70–E76
.
36.
Shusterman, S.
, &
Meadows,A.T.
(2000).
Long-term survivors of childhood leukemia
. Current Opinion in Hematology, 7,
217–222
.
37.
Taylor, H.G.
,
Yeates, K.O.
,
Wade, S.L.
,
Drotar, D.
,
Klein, S.K.
, &
Stancin,T.
(1999).
Influences on first-year recovery from traumatic brain injury in children
. Neuropsychology, 13,
76–89
.
38.
Taylor, H.G.
,
Yeates, K.O.
,
Wade, S.L.
,
Drotar, D.
,
Stancin,T.
, &
Burant, C.
(2001).
Bidirectional child–family influences on outcomes of traumatic
brain injury in children
. Journal of the International Neuropsychological Society,
7,
755–767
.
39.
Van Dongen-Melman
,
J.E.W.M.
,
Pruyn, J.F.A.
,
De Groot,A.
,
Koot, H.M.
,
Hahlen, K.
, &
Verhulst, F.C.
(1995).
Late psychosocial consequences for parents of children who survived cancer
. Journal of Pediatric Psychology, 20,
567–586
.
40.
Wade, S.L.
,
Taylor, H.G.
,
Drotar, D.
,
Stancin,T.
, &
Yeates, K.O.
(1998).
Family burden and adaptation during the initial year after traumatic brain
injury in children
. Pediatrics, 102,
110–116
.
41.
Zebrack, B.J.
, &
Chesler, M.A.
(2002).
Quality of life in childhood cancer survivors
. Psycho-Oncology, 11,
132–141
.
