Pediatric Supportive Care (PDQ®): Supportive care - Health Professional Information [NCI] - Families
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  and parent gender  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.
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. 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. In general, parents are seen as resilient,[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.[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.
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.[Level of evidence: II]
- Post-traumatic distress symptoms (reported by approximately 50% of siblings).[Level of evidence: II]
- Distress about family disruptions and separations.
- Lack of attention associated with the focus of other family members on the ill child.
- Negative interactions with family members.
- Fear of the sibling's death.
Siblings of children with cancer also report becoming more compassionate and perceiving that their families are drawn closer together through the experience.
The risk to families increases with the following conditions:
- Younger patient age.
- Longer duration of cancer treatment.
- Whether the child with cancer dies.
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. Social support programs such as sibling groups  or summer camp experiences  appear to result in reductions in reported anxiety and improved self-esteem in siblings of children treated for cancer.
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- 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.
- 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.
- 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.
- Norberg AL, Lindblad F, Boman KK: Parental traumatic stress during and after paediatric cancer treatment. Acta Oncol 44 (4): 382-8, 2005.
- 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.
- 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.
- 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.
- 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.
- 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.
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- 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.
- 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.
- 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.
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- 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.
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- 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.
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- 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.
- 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.
- 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.
- Packman W: Psychosocial impact of pediatric BMT on siblings. Bone Marrow Transplant 24 (7): 701-6, 1999.
- 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.
- Murray JS: Self-concept of siblings of children with cancer. Issues Compr Pediatr Nurs 24 (2): 85-94, 2001 Apr-Jun.