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While sophisticated data on specific problems are available, very little is known about the overall quality of life of long-term survivors of malignancies in childhood. We used a previously validated 15-dimensional questionnaire to examine the perceived health-related quality of life of 168 survivors, currently aged 16-35 years, who had been treated for a malignancy at a single institution between 1961 and 1993. All had been off therapy for at least 1 year (median, 12 years). In statistical terms, the quality of life score of the survivors was significantly better than that of 129 normal controls [0.966 versus 0.941 (theoretical maximum 1), respectively; P < 0.001]; however, a difference of this magnitude is most likely not clinically significant. There were no associations between original diagnosis and present quality of life, but the numbers in each diagnostic group were small. The survivors reported significantly better levels of vitality, distress, depression, discomfort, elimination and sleeping dimensions than the controls. Although we are presently not able to identify all the contributing factors, we speculate that the high perceived quality of life of long-term survivors of childhood malignancies is at least in part a consequence of denial mechanisms which compensate or even overcompensate the objectively measurable late effects of childhood cancer.
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PMID:Health-related quality of life of adults surviving malignancies in childhood. 915 41

This study was designed to investigate associations between family relationships, personal-psychological caregiver adaptation (ie, depressive symptomatology, sense of burden), and ability to function within the health care system (perceived doctor-parent relationship) in mothers of child cancer patients. Data were collected through a survey of a sample of 29 mothers whose children were diagnosed with some form of childhood cancer, mainly leukemia. Family functioning was positively related to both caregiver adaptation and doctor-parent relationship. Mothers who reported decreased maternal depression and burden were significantly more likely to report respectively improved spousal relationships and improved spousal communication. Mothers reporting more positive doctor-parent relationships also described themselves as having improved relationships with spouse and child, and improved spousal communication. Maternal well-being and doctor-parent relationship were not directly related. By suggesting that both intrapsychic and instrumental maternal adaptation are influenced by positive relationships in the family, this study provides support for the social ecological model of stress. The possibility that family factors exert a direct influence on both caregiver intrapsychic well-being and instrumental skills argues for the importance of their being carefully considered in any models evaluating caregiver adaptation.
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PMID:The importance of family functioning to caregiver adaptation in mothers of child cancer patients: testing a social ecological model. 947 93

The demands of cancer on children and their parents have been studied and understood for many years now. However, very little focus has been placed on one other very important part of the family system--the siblings. In the health care profession today, there is a growing awareness that the psychosocial needs of siblings of children with cancer are less adequately met than those of other family members. Research suggests that siblings are particularly vulnerable to adjustment difficulties (depression, anger, anxiety, feelings of guilt, and social isolation), and they experience similar stress to that of the ill child Siblings have been identified as the most emotionally neglected and unhappy of all family members during serious childhood illnesses. The purpose of this study was to gain a better understanding of the lived experience of one 14-year-old sibling's experience with childhood cancer. Through the qualitative research process of phenomenology, the researcher gained a greater understanding of the participant's experience and how the childhood cancer experiences affected her and her family. Themes that emerged through the process of content analysis included emotional intensity, increased empathy for others, personal growth, need for support, and desire to help others.
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PMID:The lived experience of childhood cancer: one sibling's perspective. 1053 88

The demands of the childhood cancer experience on children and their parents has been investigated for a number of years. Despite this research, very little emphasis has been placed on well siblings. In the health care profession today, there is a growing perception that the psychosocial needs of the healthy siblings of children with cancer are less sufficiently met than those of other members of the family system. Previous research proposes that well siblings are especially susceptible to a number of adjustment difficulties (such as depression, anger, anxiety, feelings of guilt, and social isolation) (Murray, 1999). Given these findings, the question arises as to whether the adjustment difficulties seen in siblings are a result of the loss of, or separation from, the attachment figure--the mother who is busy caring for the child with cancer. The purpose of this article is to use attachment theory as a conceptual framework to try to understand the effects of the childhood cancer experience on siblings. Recent findings regarding siblings of children with cancer and some speculations regarding clinical implications are provided.
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PMID:Attachment theory and adjustment difficulties in siblings of children with cancer. 1083 58

An overview is given of the social and emotional adjustment in young survivors of childhood cancer. The results are described in terms of self-esteem, anxiety, depression and posttraumatic stress (emotional adjustment), and in terms of behavioral functioning, social competence and school performance (socio-behavioral adjustment). Furthermore, factors related to survivors' adjustment are reported: demographics, illness- and treatment-related factors, coping and social support, and family and parental functioning. Limitations of the studies and consequences for future research are discussed. On the whole, the adjustment of young cancer survivors as a group was reasonably good, but the findings with respect to the emotional and social adjustment were inconsistent. This might be attributed to limitations of the study designs and the fact that the studies were not all directly comparable. In order to gain more insight into the predictors of adjustment, longitudinal studies are recommended, which should include control groups or standardized instruments with norm data, and use cancer-specific measures in addition to generic measures.
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PMID:Social and emotional adjustment in young survivors of childhood cancer. 1168 Aug 27

Childhood cancer can have detrimental effects on the psychosocial well-being of healthy siblings of children with cancer. The limited research done over the past 40 years has identified adjustment difficulties such as poor self-concept, depression, sorrow, anxiety, and feelings of loneliness in children who have a sibling with cancer. To date, clinical research investigating self-concept is scarce as it relates to siblings of children with cancer. The purpose of this study was to examine self-concept in siblings of children with cancer who attended summer camp. A nonprobability purposive sample consisted of 50 school-age siblings of children with cancer. Using the Personal Attribute Inventory for Children (PAIC) to measure children's self-concept, the researcher found that healthy siblings who attended summer camp scored higher on the PAIC than healthy siblings who did not attend camp. This research suggests that social support such as a camp experience may play an important function in coping with having a brother or sister with childhood cancer.
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PMID:Self-concept of siblings of children with cancer. 1181 30

Mothers of children with serious illnesses have lower levels of well-being than mothers in the general population. Problem-solving therapy (PST), a cognitive-behavioral intervention, has been shown to be effective in treating negative affectivity (depression, anxiety) and other manifestations of reduced well-being. This report describes a problem-solving skills training (PSST) intervention, based on problem-solving therapy, for mothers of newly diagnosed pediatric cancer patients. Ninety-two mothers were randomly assigned to receive PSST or to receive standard psychosocial care (Control Group). After the 8-week intervention, mothers in the PSST Group had significantly enhanced problem-solving skills and significantly decreased negative affectivity compared with controls. Analysis revealed that changes in self-reports of problem-solving behaviors accounted for 40% of the difference in mood scores between the two groups. Interestingly, PSST had the greatest impact on improving constructive problem solving, whereas improvement in mood was most influenced by decreases in dysfunctional problem solving. The implications of these findings for refinement of the PSST intervention and for extension to other groups of children with serious illnesses are discussed.
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PMID:Problem-solving skills training for mothers of children with newly diagnosed cancer: a randomized trial. 1194 69

Reduced cortisol coupled with elevated catecholamines has been reported for patients with post-traumatic stress disorder (PTSD) precipitated by war and other traumas considered to be "outside the range of usual experiences". It is unclear whether these neuroendocrine abnormalities also occur in PTSD precipitated by more commonly experienced traumas associated with life-threatening illness. Overnight (12-h) urinary cortisol, norepinephrine (NE) and epinephrine (E) were measured in 21 mothers of pediatric cancer survivors with (n = 14) and without PTSD symptoms (n = 7) and in control mothers of healthy children (n = 8). Mothers meeting subthreshold and full PTSD criteria were combined to form the PTSD symptoms group. The PTSD group showed lower total urinary cortisol and a trend for higher total urinary NE than the non-PTSD group, who in turn were no different from controls. There were no significant group effects for E. Cortisol (but not NE) effects remained after controlling for symptoms of co-morbid depression. The finding of reduced cortisol in illness-related PTSD demonstrates neuroendocrine dysregulation similar to that found previously in other types of trauma (e.g., war-related). Future longitudinal studies with repeated urinary collection procedures will be necessary to clarify measurement issues and establish the time course and health implications of the neuroendocrine perturbations.
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PMID:Urinary cortisol and catecholamines in mothers of child cancer survivors with and without PTSD. 1218 16

In recent years the necessity of measuring quality of life in childhood cancer survivors has been stressed. This paper gives an overview of the results of studies into the quality of life (QL) of young adult survivors of childhood cancer and suggest areas for future research. The review located 30 empirical studies published up to 2001. The results are described in terms of the following QL dimensions: physical functioning (QL, general health), psychological functioning (overall emotional functioning, depression and anxiety, self-esteem), social functioning (education, employment, insurance, living situation, marital status and family), and sexual functioning. Factors related to survivors' QL are reported: demographics and illness- and treatment related variables. Although the literature yields some inconsistent findings, a number of clear trends can be identified: (a) most survivors reported being in good health, with the exception of some bone tumour survivors; (b) most survivors function well psychologically; (c) survivors of CNS tumours and survivors of acute lymphoblastic leukaemia (ALL) are at risk for educational deficits; (d) job discrimination, difficulties in obtaining work and problems in obtaining health and life insurance were reported; (e) survivors have lower rates of marriage and parenthood; (f) survivors worry about their reproductive capacity and/or about future health problems their children might experience as a result of their cancer history. There is a need for methodological studies that measure QL among survivors of childhood cancer more precisely by taking into account the effects of the severity of the cancer and the long-term impact of different treatments. Additional data are needed to help us understand the needs of survivors and to identify those subgroups of survivors who are at greatest risk for the adverse sequelae of the disease and its treatment.
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PMID:Quality of life in young adult survivors of childhood cancer. 1243 17

Clinical reports suggest that many survivors of childhood cancer experience fatigue as a long-term effect of their treatment. To investigate this issue further, we assessed the level of fatigue in young adult survivors of childhood cancer. We compared the results with a group of young adults with no history of cancer. The impact of demographic, medical and treatment factors and depressive symptoms on survivors' fatigue was studied. Participants were 416 long-term survivors of childhood cancer (age range 16-49 years, 48% of whom were female) who had completed treatment an average of 15 years previously and 1026 persons (age range 16-53 years, 55% female) with no history of cancer. All participants completed the Multidimensional Fatigue Inventory (MFI-20), a self-report instrument consisting of five scales (general fatigue, physical fatigue, mental fatigue, reduced activity, reduced motivation) and the Center for Epidemiologic Studies Depression Scale (CES-D). Small differences were found in the mean scores for the different dimensions of fatigue between the long-term survivors and controls (range effect sizes -0.34 to 0.34). Women experienced more fatigue than men. Logistic regression revealed that being female and unemployed were the only demographic characteristics explaining the various dimensions of fatigue. With regard to medical and treatment factors, diagnosis and severe late effects/health problems were associated with fatigue. Finally, depression was significantly associated with fatigue on all subscales. Our clinical practice suggests a difference in fatigue in young adult childhood cancer survivors and their peers. This could not be confirmed in this study using the MFI-20. The well known correlation between fatigue and depression was confirmed in our study. Further research is needed to clarify the undoubtedly complex somatic and psychological mechanisms responsible for the development, maintenance and treatment of fatigue in childhood cancer survivors.
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PMID:No excess fatigue in young adult survivors of childhood cancer. 1250 53


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