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Pediatric Supportive Care (PDQ®)

Health Professional Version
Last Modified: 02/21/2014

Families

Parents
Siblings

A commonly repeated idea in the cancer community is that cancer is a family disease; this concept is clearly supported by parents and siblings of children who are being treated for cancer. However, the effects of having a child or sibling with cancer are not uniform, either for all family members or at all points in the treatment process, and the literature reflects the variability of each family member’s experience.

Parents

The diagnosis of childhood cancer represents the start of a period of substantial distress for parents, who report shock, emotional pain, difficulty coping with the necessary procedures performed on their child, rumination, and high levels of information seeking accompanied by a sense of lack of control.[1-3] One study found that all but one participant in a sample of 119 mothers and 52 fathers of children undergoing cancer treatment reported traumatic stress symptoms such as intrusive thoughts, physiologic arousal, and avoidance.[4] When parents of children undergoing treatment (n = 175) were compared with parents of children who had completed treatment (n = 238), symptoms of traumatic stress (intrusion, arousal) were reported more frequently by the parents during the acute phase of treatment than by the parents after treatment, though some parents reported these symptoms after treatment. Some demographic factors may play a role in the degree to which parents experienced significant stress that impairs function. Mothers were more likely to report higher levels of stress than were fathers, and parents with fewer years of formal education and lower socioeconomic status were more likely to experience traumatic stress at any time.[5]

Patterns of parental stress in families of children treated for cancer differ from those in families of children treated for other diseases. In one large study of 675 parents of children who were treated for cancer or diabetes or who were healthy, parents of children with cancer reported significantly higher levels of distress—as indicated in the specific areas of anxiety, physical and psychological distress, depression, and loneliness—than did parents of children with diabetes. Distress levels of parents of patients with cancer matched those in parents of patients with diabetes in measures of uncertainty, loss of control, self-esteem, disease-related fear, and sleep disturbances. Distress levels for parents of children with cancer decreased in intensity with longer time since diagnosis.[6]

At the same time that they are dealing with increased distress, parents of children with cancer report wanting to remain strong and optimistic for their children.[7] One study found no differences in multiple measures of family distress and psychological functioning between families of children with cancer and families with healthy children.[8]

Several factors appear to be predictive of long-term parental adjustment. Better short- and long-term adjustment is experienced by parents who:[9-11]

  • Are employed.
  • Have social support from family, friends, and health care team members.
  • Experience lower levels of parenting stress.
  • View their children’s quality of life positively.
  • Have positive expectations for treatment outcome.

Factors associated with poorer parental adjustment include the following:[12,13]

  • Low parental expectations for positive outcomes.
  • Feelings of helplessness, uncertainty, and anxiety.
  • Low levels of social support.
  • Negative interactions with health care team members.
  • Negative assessment of the child’s quality of life.

Race [14] and parent gender [15] may affect the intensity of the effect of these factors on parental functioning. In rare circumstances, the stress of coping with pain, adverse side effects, lack of control or understanding of information or outcomes, and conflicts with health care professionals may lead parents to drop out of cancer treatment for their children.[16]

Most studies suggest that over time, maternal affective distress and perceived stress have been shown to decline, but the perceived burden of caring for a child with cancer remains stable, as do positive characteristics such as parental control, nurturance, and responsiveness.[14] This pattern may be related to the high levels of social support provided at the time of diagnosis, with a gradual decrease in the quantity of support but stable perceived quality of support across all phases of cancer treatment.[15] In general, parents are seen as resilient,[12][Level of evidence: II] but parental loneliness and continued uncertainty may last far beyond the treatment phase if there are ongoing late effects of treatment for the child.[17][Level of evidence: II] A few studies have found that a substantial number of parents (30%–36%) of long-term cancer survivors may experience intense long-term stress-related symptoms that fall below the threshold for a diagnosis of post-traumatic stress disorder (PTSD) but that are nevertheless a significant problem for these parents.[18,19][Level of evidence: II] Symptoms were severe enough that in 20% of families, at least one parent met the criteria for a diagnosis of PTSD.[19]

Siblings

The challenges of dealing with the diagnosis and treatment of childhood cancer also has implications for the coping and adjustment of siblings. During treatment, siblings of children with cancer may report:

  • Higher levels of anxiety and loneliness than experienced by siblings of healthy children.[20][Level of evidence: II]
  • Post-traumatic distress symptoms (reported by approximately 50% of siblings).[21][Level of evidence: II]
  • Distress about family disruptions and separations.[21]
  • Lack of attention associated with the focus of other family members on the ill child.[21]
  • Negative interactions with family members.[21]
  • Fear of the sibling’s death.[21]

Siblings of children with cancer also report becoming more compassionate and perceiving that their families are drawn closer together through the experience.[22]

The risk to families increases with the following conditions:

  • Younger patient age.[22]
  • Longer duration of cancer treatment.[20]
  • Whether the child with cancer dies.[23]

For siblings of children who undergo allogeneic hematopoietic stem cell transplantation, the risk for anxiety and lower self-esteem is higher for siblings who serve as hematopoietic stem cell donors, while non-donors are at higher risk of developing school problems.[24] Social support programs such as sibling groups [25] or summer camp experiences [26] appear to result in reductions in reported anxiety and improved self-esteem in siblings of children treated for cancer.

References
  1. McGrath P: Treatment for childhood acute lymphoblastic leukaemia: the fathers' perspective. Aust Health Rev 24 (2): 135-42, 2001.  [PUBMED Abstract]

  2. Levi RB, Marsick R, Drotar D, et al.: Diagnosis, disclosure, and informed consent: learning from parents of children with cancer. J Pediatr Hematol Oncol 22 (1): 3-12, 2000 Jan-Feb.  [PUBMED Abstract]

  3. Goldbeck L: Parental coping with the diagnosis of childhood cancer: gender effects, dissimilarity within couples, and quality of life. Psychooncology 10 (4): 325-35, 2001 Jul-Aug.  [PUBMED Abstract]

  4. Kazak AE, Boeving CA, Alderfer MA, et al.: Posttraumatic stress symptoms during treatment in parents of children with cancer. J Clin Oncol 23 (30): 7405-10, 2005.  [PUBMED Abstract]

  5. Norberg AL, Lindblad F, Boman KK: Parental traumatic stress during and after paediatric cancer treatment. Acta Oncol 44 (4): 382-8, 2005.  [PUBMED Abstract]

  6. Boman KK, Viksten J, Kogner P, et al.: Serious illness in childhood: the different threats of cancer and diabetes from a parent perspective. J Pediatr 145 (3): 373-9, 2004.  [PUBMED Abstract]

  7. Young B, Dixon-Woods M, Windridge KC, et al.: Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. BMJ 326 (7384): 305, 2003.  [PUBMED Abstract]

  8. Noll RB, Gartstein MA, Hawkins A, et al.: Comparing parental distress for families with children who have cancer and matched comparison families without children with cancer. Fam Syst Med 13 (1): 11-27, 1995. 

  9. Rourke MT, Stuber ML, Hobbie WL, et al.: Posttraumatic stress disorder: understanding the psychosocial impact of surviving childhood cancer into young adulthood. J Pediatr Oncol Nurs 16 (3): 126-35, 1999.  [PUBMED Abstract]

  10. Kazak AE, Barakat LP: Brief report: parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends. J Pediatr Psychol 22 (5): 749-58, 1997.  [PUBMED Abstract]

  11. Grootenhuis MA, Last BF: Predictors of parental emotional adjustment to childhood cancer. Psychooncology 6 (2): 115-28, 1997.  [PUBMED Abstract]

  12. Dockerty JD, Williams SM, McGee R, et al.: Impact of childhood cancer on the mental health of parents. Med Pediatr Oncol 35 (5): 475-83, 2000.  [PUBMED Abstract]

  13. Santacroce S: Uncertainty, anxiety, and symptoms of posttraumatic stress in parents of children recently diagnosed with cancer. J Pediatr Oncol Nurs 19 (3): 104-11, 2002 May-Jun.  [PUBMED Abstract]

  14. Steele RG, Long A, Reddy KA, et al.: Changes in maternal distress and child-rearing strategies across treatment for pediatric cancer. J Pediatr Psychol 28 (7): 447-52, 2003 Oct-Nov.  [PUBMED Abstract]

  15. Hoekstra-Weebers JE, Jaspers JP, Kamps WA, et al.: Psychological adaptation and social support of parents of pediatric cancer patients: a prospective longitudinal study. J Pediatr Psychol 26 (4): 225-35, 2001.  [PUBMED Abstract]

  16. Yeh CH, Lin CF, Tsai JL, et al.: Determinants of parental decisions on 'drop out' from cancer treatment for childhood cancer patients. J Adv Nurs 30 (1): 193-9, 1999.  [PUBMED Abstract]

  17. Van Dongen-Melman JE, Pruyn JF, De Groot A, et al.: Late psychosocial consequences for parents of children who survived cancer. J Pediatr Psychol 20 (5): 567-86, 1995.  [PUBMED Abstract]

  18. Brown RT, Madan-Swain A, Lambert R: Posttraumatic stress symptoms in adolescent survivors of childhood cancer and their mothers. J Trauma Stress 16 (4): 309-18, 2003.  [PUBMED Abstract]

  19. Kazak AE, Alderfer M, Rourke MT, et al.: Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. J Pediatr Psychol 29 (3): 211-9, 2004 Apr-May.  [PUBMED Abstract]

  20. Hamama R, Ronen T, Feigin R: Self-control, anxiety, and loneliness in siblings of children with cancer. Soc Work Health Care 31 (1): 63-83, 2000.  [PUBMED Abstract]

  21. Alderfer MA, Labay LE, Kazak AE: Brief report: does posttraumatic stress apply to siblings of childhood cancer survivors? J Pediatr Psychol 28 (4): 281-6, 2003.  [PUBMED Abstract]

  22. Sargent JR, Sahler OJ, Roghmann KJ, et al.: Sibling adaptation to childhood cancer collaborative study: siblings' perceptions of the cancer experience. J Pediatr Psychol 20 (2): 151-64, 1995.  [PUBMED Abstract]

  23. MacLeod KD, Whitsett SF, Mash EJ, et al.: Pediatric sibling donors of successful and unsuccessful hematopoietic stem cell transplants (HSCT): a qualitative study of their psychosocial experience. J Pediatr Psychol 28 (4): 223-30, 2003.  [PUBMED Abstract]

  24. Packman W: Psychosocial impact of pediatric BMT on siblings. Bone Marrow Transplant 24 (7): 701-6, 1999.  [PUBMED Abstract]

  25. Houtzager BA, Grootenhuis MA, Last BF: Supportive groups for siblings of pediatric oncology patients: impact on anxiety. Psychooncology 10 (4): 315-24, 2001 Jul-Aug.  [PUBMED Abstract]

  26. Murray JS: Self-concept of siblings of children with cancer. Issues Compr Pediatr Nurs 24 (2): 85-94, 2001 Apr-Jun.  [PUBMED Abstract]