Posttraumatic stress (PTS) symptoms have been reported in mothers and fathers of childhood cancer survivors; however, little is known about patterns of PTS in these families. Cluster analysis was applied to the Posttraumatic Stress Disorder (PTSD) Reaction Index scores of 98 couples parenting adolescent childhood cancer survivors to describe patterns of PTS in families, yielding the following 5 clusters: Minimal PTS, Mothers Elevated, Disengaged, Fathers Elevated, and Elevated PTS. The clusters were validated using data from a structured psychiatric interview, an additional self-report measure of PTS, and an index of family functioning. These clinically meaningful patterns reveal that a majority of families had at least one parent with moderate to severe PTS, which supports development of family-based interventions for this population.
"Consistent with a family systems perspective highlighting the importance of family patterns of interaction for the adaptation of each family member and the interrelatedness of family members (Miller, Ryan, Keitner, Bishop, & Epstein, 2000), the entire family is affected by the diagnosis and treatment of childhood cancer. These experiences represent a potentially traumatic event that can have lasting psychological effects on each member of the family and the family system (Alderfer, Labay, & Kazak, 2003; Alderfer, Cnaan, Annunziato, & Kazak, 2005; Barakat, Alderfer, & Kazak, 2006; Gerhardt et al., 2007). While distress generally tends to recede over time, caregivers of childhood brain tumor survivors continue to experience elevated levels of illness-related uncertainty and caregiving demand secondary to the continued management of disease late effects (Deatrick et al., 2009; Hutchinson et al., 2009). "
[Show abstract][Hide abstract] ABSTRACT: Many childhood brain tumor survivors experience significant neurocognitive late effects across multiple domains that negatively affect quality of life. A theoretical model of survivorship suggests that family functioning and survivor neurocognitive functioning interact to affect survivor and family outcomes. This paper reviews the types of neurocognitive late effects experienced by survivors of pediatric brain tumors. Quantitative and qualitative data from three case reports of young adult survivors and their mothers are analyzed according to the theoretical model and presented in this paper to illustrate the importance of key factors presented in the model. The influence of age at brain tumor diagnosis, family functioning, and family adaptation to illness on survivor quality of life and family outcomes is highlighted. Future directions for research and clinical care for this vulnerable group of survivors are discussed.
The Clinical Neuropsychologist 07/2011; 25(6):942-62. DOI:10.1080/13854046.2011.580284 · 1.72 Impact Factor
"Parents play an important role during treatment by making decisions about their child's care, navigating the healthcare system, and by providing emotional support to their children and family (Klassen et al., 2007). Parents also have potentially traumatic experiences related to their child's diagnosis and treatment, and post-traumatic stress symptoms have been shown to persist into survivorship (Alderfer et al., 2005). "
[Show abstract][Hide abstract] ABSTRACT: Childhood cancer has long-term implications for survivors and their family members. While the impact of cancer on the family continues into adulthood, little research exists on family related issues during this important developmental period. In order to advance our understanding of families of adolescent and young adult (AYA) childhood cancer survivors, a measure of health-related beliefs for parents of AYA cancer survivors was developed. Exploratory factor analysis based on the mothers' data was used to identify four factors among 23 items: Social Competence, Satisfaction with Healthcare, Health Perceptions, and Health Apprehension. The scales are associated with psychological distress, quality of life, and posttraumatic stress symptoms but unrelated to age of the child at diagnosis and cancer treatment intensity. The beliefs identified in this study are consistent with clinical observations of families of young adult survivors and provide indications for the importance of ongoing attention to the families of childhood cancer survivors.
Families Systems & Health 03/2011; 29(1):55-63. DOI:10.1037/a0022198 · 1.13 Impact Factor
"Avoidant behaviors may inhibit survivors from seeking appropriate follow-up care, particularly if care is delivered in the hospital where they received their cancer therapy. Additionally, both parents   and siblings  of survivors may develop symptoms of PTSD, and thus the primary care physician must extend their assessment of mental health to survivors' families. Rather than developing PTSD, some survivors demonstrate posttraumatic growth  and psychosocial thriving  as a result of their cancer experience. "
[Show abstract][Hide abstract] ABSTRACT: Childhood cancer survivors are at increased risk of serious morbidity, premature mortality, and diminished health status. Proactive and anticipatory risk-based health care of survivors and healthy lifestyles can reduce these risks. In this article, the authors first briefly discuss four common problems of survivors: neurocognitive dysfunction, cardiovascular disease, infertility and gonadal dysfunction, and psychosocial problems. Second, the authors discuss the concept of risk-based care, promote the use of recently developed evidence-based guidelines, describe current care in the United States, Canada, and the Netherlands, and articulate a model for shared survivor care that aims to optimize life long health of survivors and improve two-way communication between the cancer center and the primary care physician.
Hematology/oncology clinics of North America 02/2010; 24(1):129-49. DOI:10.1016/j.hoc.2009.11.013 · 2.30 Impact Factor
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