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Humphrey LM, Hill DL, Carroll KW, et al.
Psychological Well-Being and Family Environment of Siblings of Children with Life Threatening Illness.
J Palliat Med. 2015; 18(11):981-4 [PubMed] Related Publications

BACKGROUND: The psychological well-being of siblings of children with life threatening illness remains largely uncharted. Pediatric cancer research suggests that a supportive family environment may protect the psychological well-being of siblings.
OBJECTIVE: We hypothesized that (1) siblings of pediatric palliative care patients would show clinical/behavioral scores that were elevated but that rates of serious psychopathology would be comparable to the general population of children their age; and (2) higher family functioning scores would be associated with lower clinical scores and higher adaptive scores for these siblings.
METHODS: We conducted an observational study with families in which a patient receiving palliative care had one or more siblings between the ages of 6 and 11. Parents completed the Behavioral Assessment System for Children, Second Edition (BASC-2) to assess the siblings' psychological well-being and the Family Assessment Device (FAD) to assess the family environment.
RESULTS: Twenty-four parents reported data for 30 siblings. Only three siblings scored in the clinical range on a BASC-2 composite clinical scale, and 11 siblings scored in the at-risk range on one or more composite scales. Higher FAD scores predicted significantly higher externalization composite clinical scores (7.54, 95% CI: 1.12, 13.97, p < 0.05) and significantly higher behavioral composite scores (7.88, 95% CI: 1.55, 14.21, p < 0.05).
DISCUSSION: Siblings of pediatric palliative care patients are not experiencing lower psychological well-being than the general population. The prediction that a positive family environment would be associated with higher levels of psychological health was supported.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Buchbinder D, Oeffinger K, Franco-Villalobos C, et al.
Tobacco Use Among Siblings of Childhood Cancer Survivors: A Report From the Childhood Cancer Survivor Study.
Pediatr Blood Cancer. 2016; 63(2):326-33 [PubMed] Free Access to Full Article Related Publications

BACKGROUND: Having a brother or sister with childhood cancer may influence health behaviors during adulthood. The aim of this study was to compare tobacco use in siblings of survivors with peers and to identify factors associated with sibling tobacco use.
PROCEDURES: A retrospective cohort study was conducted using adult siblings (N = 1,974) of 5+ year cancer survivors in the Childhood Cancer Survivor Study (CCSS) and participants (N = 24,105, weighted to match CCSS) in the 2007 National Health Interview Survey. Self-reported tobacco use, sociodemographic, and cancer-related risk factors were analyzed.
RESULTS: Siblings were equally likely to have ever smoked compared to their peers (odds ratio [OR] 1.02, 95% confidence interval [CI] 0.93-1.12). Siblings were less likely to be current smokers (OR 0.83, 95%CI 0.73-0.94), but more likely to be former smokers (OR 1.21, 95%CI 1.08-1.35). Siblings with low education were more likely to ever smoke (OR 1.51, 95%CI 1.15-2.00) and be current smokers (OR 1.67, 95%CI 1.24-2.26) compared to their peers. Among siblings, risk factors for current tobacco use included the following: low income <$20,000 (OR 1.66, 95%CI 1.09-2.54), low education (OR 6.68, 95%CI 4.07-10.97), psychological distress (OR 5.36, 95%CI 2.21-13.02), and heavy alcohol use (OR 3.68, 95%CI 2.50-5.41).
CONCLUSIONS: Siblings of survivors take up smoking at similar rates to their peers, but are more likely to quit. Efforts are needed to address disparities by providing greater psychosocial support and education for the lowest socioeconomic status families facing childhood cancer.

Related: Cancer Prevention and Risk Reduction

Lövgren M, Jalmsell L, Eilegård Wallin A, et al.
Siblings' experiences of their brother's or sister's cancer death: a nationwide follow-up 2-9 years later.
Psychooncology. 2016; 25(4):435-40 [PubMed] Related Publications

OBJECTIVE: The aim of this study was to examine siblings' experiences of their brother's or sister's cancer death and if these experiences influenced levels of anxiety 2-9 years later.
METHODS: This nationwide survey was conducted in Sweden in 2009. All siblings who had a brother/sister who was diagnosed with cancer before the age of 17 years and who died before the age of 25 years during 2000-2007 were invited. Of those, 174 siblings participated (participation rate: 73%). Mixed data from the survey about the siblings' experiences of death were included as well as data from the Hospital Anxiety and Depression Scale. To examine the experiences, descriptive statistics and content analysis were used. Mann-Whitney U-test was conducted to investigate if the experiences influenced anxiety 2-9 years later.
RESULTS: The siblings reported poor knowledge and experienced a lack of communication about their brother's/sister's death, for example, about the time frame, bodily changes near death, and about their own experiences. Siblings who reported that no one talked with them about what to expect when their brother/sister was going to die reported higher levels of anxiety 2-9 years after the loss. Seventy percent reported that they witnessed their brother/sister suffering in the last hours in life. Many of those who were not present during the illness period and at the time of death expressed regret.
CONCLUSION: It is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on.

Related: Cancer Prevention and Risk Reduction

Woodgate RL, Tailor K, Yanofsky R, Vanan MI
Childhood brain cancer and its psychosocial impact on survivors and their parents: A qualitative thematic synthesis.
Eur J Oncol Nurs. 2016; 20:140-9 [PubMed] Related Publications

PURPOSE: The multiple late-effects experienced by survivors of childhood brain tumors, are not only a source of great distress for survivors, but also for their parents and siblings. The aim of this review is to systematically identify and synthesize qualitative evidence on how survivors of childhood brain tumors and their parents experience life after surviving childhood brain tumors.
METHODS: Based on literature search in seven databases, 10 qualitative studies, published between 2004 and 2014 were included.
RESULTS: Surviving a childhood brain tumor was experienced as paradox for survivors and their parents. While parents and survivors celebrated making it through the cancer experience, they nonetheless encountered a world with loss and new challenges. In short, the experience of survival was a bittersweet experience for survivors and their parents. Survivors and their parents experienced change that included living with uncertainty, intensification of the parenting role, a changing social world, a different way of being, and the need for additional help.
CONCLUSION: Results from this synthesis reinforce that surviving a childhood brain tumor should be viewed as a point on a continuum of living with a brain tumor. Psychosocial effects of surviving brain cancer affect the entire family unit. A need for psychosocial support is evident, although development of such supports necessitates a more full understanding of challenges face by the child affected, their parents, and siblings. The limitations noted in this synthesis reinforce that more qualitative research is needed in this subject area.

Related: Childhood Brain Tumours Childhood Brain Tumors

Kamibeppu K, Sato I, Hoshi Y
The experience of Japanese adolescents and young adults after losing siblings to childhood cancer: three types of narratives.
J Pediatr Oncol Nurs. 2015 May-Jun; 32(3):165-77 [PubMed] Related Publications

The aim of this study was to describe Japanese adolescents' and young adults' experiences after losing siblings to childhood cancer. A conceptual framework of the transition and analysis based on narrative method were adopted from qualitative data from 6 Japanese adolescents and young adults who had lost their siblings to childhood cancer. It was revealed that the participants' psychological experience after the sibling's death was directed by their perceptions of their mothers' responses to bereavement. We also found that the psychological distance between participants and their mothers could be an important factor in enabling transition into mourning and in orienting the lost sibling in their mind. The stories obtained from these 6 participants were categorized into the following 3 types of narratives: "Mother in another world and the sibling who became a god," "Return of the loving mother and the sibling as savior," and "The poor mother and the sibling who needs my help to carry on her legacy." This typology will serve as a framework for grief care and future research.

Related: Cancer Prevention and Risk Reduction

Long KA, Marsland AL, Wright A, Hinds P
Creating a tenuous balance: siblings' experience of a brother's or sister's childhood cancer diagnosis.
J Pediatr Oncol Nurs. 2015 Jan-Feb; 32(1):21-31 [PubMed] Related Publications

More than 14,000 children are diagnosed with cancer in the United States each year. Prolonged, intensive treatment protocols disrupt the entire family, including siblings. Here, we employed grounded theory methodology to examine the experiences of 30 nonbereaved adolescent siblings of children receiving cancer treatment. The central organizing theme of the emergent data is "creating a tenuous balance." Contributing themes include (a) knowing something is seriously wrong, (b) figuring out the meaning of cancer, (c) adapting to changes in personal and family life, and (d) handling emotional reactions to cancer. Overall, findings suggest an ongoing, active process by which siblings notice and adapt to the many unexpected and taxing aspects of their brother's or sister's cancer diagnosis and treatment, including shifts in how the family system operates. Findings highlight the important role of siblings in family-centered cancer care. Future, larger scale research should develop targeted interventions for these siblings.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page USA

Berbis J, Oudin C, Alessandrini M, et al.
Quality of life in minor siblings of childhood leukemia survivors, long-term after diagnosis: A LEA study (for Leucemies de l'Enfant et de l'Adolescent--childhood and adolescent leukemia).
Psychooncology. 2015; 24(6):661-8 [PubMed] Related Publications

OBJECTIVE: The objectives of this study are to assess the quality of life (QoL) of siblings of childhood leukemia survivors in comparison with population controls and to identify determinants of sibling's QoL.
METHODS: The nearest-aged siblings (8-17 years) of minor CLS participating in the French LEA cohort (Childhood and Adolescent Leukemia), at the Marseilles center, were included. Siblings' QoL was self-reported using the 'Vécu et Santé Perçue de l'Adolescent et l'enfant' questionnaire. Results were compared with those obtained for age-matched and sex-matched French controls subjects. Characteristics likely to be associated with siblings' QoL (sibling's and survivor's sociodemographic and health-related and cancer-related characteristics) were explored through multivariate analysis.
RESULTS: Fifty-one siblings participated (mean age 12.7 ± 2.8 years, mean follow-up duration from diagnosis to evaluation 8.8 ± 2.5 years). They reported a significantly higher perception of QoL compared with the general population regarding psychological domains, while reporting a lower perception regarding social domains. In multivariate analysis, older age at diagnosis for both siblings and survivors was risk factor for impaired psychological QoL. An elevated leukemia burden index was linked with lower scores in self-esteem dimension, whereas having at least one sequelae for the survivor was linked with better scores in psychological well-being dimension. Low or middle affluence and older sibling's age at diagnosis were risk factors for impaired social QoL. Maximal R(2) was 30%.
CONCLUSIONS: Minor siblings of CLS reported a relatively good QoL, particularly in psychological domains. Given the low proportion of QoL variability explained, other contributing factors (e.g., family functioning) must be explored.

Related: Leukemia Childhood Leukaemia Leukemia - Molecular Biology

Alderfer MA, Stanley C, Conroy R, et al.
The social functioning of siblings of children with cancer: a multi-informant investigation.
J Pediatr Psychol. 2015; 40(3):309-19 [PubMed] Free Access to Full Article Related Publications

OBJECTIVE: This study examined social functioning among siblings of children with cancer.
METHOD: A case-control design was applied to school- and home-based data from multiple informants (peers, teachers, mothers, and self). Social reputation and peer acceptance within the classroom was compared for 87 siblings (aged 8-16 years) and 256 demographically matched peers. Self-perceptions of peer relationships and parent-reported social competence were examined among 67 siblings and 67 matched comparisons.
RESULTS: Peer reports (N = 1,633) indicated no differences between siblings and comparisons for social reputation, number of friendships, reciprocated friendships, or peer acceptance. Self-reported prosocial behavior and teacher-reported likability were higher for siblings than comparisons. Self-reported loneliness, friendship quality, and perceived social support did not differ between groups. Mothers reported less involvement in activities and poorer school performance for siblings than comparisons.
CONCLUSIONS: Peer relationships of siblings of children with cancer are similar to classmates, though they experience small decrements in activity participation and school performance.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Rosenberg AR, Postier A, Osenga K, et al.
Long-term psychosocial outcomes among bereaved siblings of children with cancer.
J Pain Symptom Manage. 2015; 49(1):55-65 [PubMed] Free Access to Full Article Related Publications

CONTEXT: The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings.
OBJECTIVES: To describe 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings and 2) potentially modifiable factors associated with poor outcomes.
METHODS: Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support).
RESULTS: Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD 7.8). Anxiety, depression, and illicit substance use increased during the year after their brother/sister's death but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P < 0.001-0.031). Almost all siblings reported that their loss still affected them; half stated that the experience impacted current educational and career goals.
CONCLUSION: How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year after the sibling death may mitigate poor long-term outcomes.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Sveen J, Eilegård A, Steineck G, Kreicbergs U
They still grieve-a nationwide follow-up of young adults 2-9 years after losing a sibling to cancer.
Psychooncology. 2014; 23(6):658-64 [PubMed] Related Publications

OBJECTIVES: The aims of this study were to assess the prevalence of unresolved grief in bereaved young adult siblings and examine possible contributing factors.
METHODS: The study was a Swedish population-based study of young adults who had lost a brother or sister to cancer, 2-9 years earlier. Of 240 eligible siblings, 174 (73%) completed a study-specific questionnaire. This study focused on whether the respondents had worked through their grief over the sibling's death and to what extent.
RESULTS: A majority (54%) of siblings stated that they had worked through their grief either 'not at all' or 'to some extent' at the time of investigation. In multiple regression analyses with unresolved grief as the dependent variable, 21% of the variance was explained by lack of social support and shorter time since loss.
CONCLUSION: The majority of bereaved young adults had not worked through their grief over the sibling's death. A small group of siblings reported that they had not worked through their grief at all, which may be an indicator of prolonged grief. Lack of social support and more recent loss were associated with not having worked through the grief over the sibling's death.

Related: Cancer Prevention and Risk Reduction

Mertens AC, Brand S, Ness KK, et al.
Health and well-being in adolescent survivors of early childhood cancer: a report from the Childhood Cancer Survivor Study.
Psychooncology. 2014; 23(3):266-75 [PubMed] Free Access to Full Article Related Publications

OBJECTIVE: With the growing number of childhood cancer survivors in the US, it is important to assess the well-being of these individuals, particularly during the transitional phase of adolescence. Data about adolescent survivors' overall health and quality of life will help identify survivor subgroups most in need of targeted attention to successfully transition to adulthood.
PARTICIPANTS AND METHODS: This ancillary study to the Childhood Cancer Survivor Study focused on children 15-19 years of age who had been diagnosed with cancer before the age of 4 years. A cohort of siblings of pediatric cancer survivors of the same ages served as a comparison sample. Adolescent health was assessed using the Child Health and Illness Profile-Adolescent Edition (CHIP-AE) survey.
RESULTS: The teen survey was sent to 444 survivor teens and 189 siblings. Of these, 307(69%) survivors and 97 (51%) siblings completed and returned the survey. The overall health profiles of siblings and survivors were similar. Among survivors, females scored significantly below males on satisfaction, discomfort, and disorders domains. Survivors diagnosed with central nervous system tumors scored less favorably than leukemia survivors in the global domains of satisfaction and disorders.
CONCLUSION: In general, adolescent survivors fare favorably compared to healthy siblings. However, identification of the subset of pediatric cancer survivors who are more vulnerable to medical and psychosocial disorders in adolescence provides the opportunity for design and implementation of intervention strategies that may improve quality of life.

Related: Cancer Prevention and Risk Reduction

Lund LW, Winther JF, Dalton SO, et al.
Hospital contact for mental disorders in survivors of childhood cancer and their siblings in Denmark: a population-based cohort study.
Lancet Oncol. 2013; 14(10):971-80 [PubMed] Related Publications

BACKGROUND: Survivors of childhood cancer are known to be at risk for long-term physical and mental effects. However, little is known about how cancers can affect mental health in the siblings of these patients. We aimed to assess the long-term risks of mental disorders in survivors of childhood cancer and their siblings.
METHODS: Hospital contact for mental disorders was assessed in a population-based cohort of 7085 Danish children treated for cancer by contemporary protocols between 1975 and 2010 and in their 13 105 siblings by use of data from the Danish Psychiatric Central Research Registry. Hazard ratios (HRs) for first hospital contact were calculated using a Cox proportional hazards model. We compared these sibling and survivor cohorts with two population-based cohorts who were not childhood cancer survivors or siblings of survivors.
FINDINGS: Survivors of childhood cancer were at increased risk of hospital contact for mental disorders, with HRs of 1·50 (95% CI 1·32-1·69) for males and 1·26 (1·10-1·44) for females. Children younger than 10 years at diagnosis had the highest risk, and increased risks were seen in survivors of CNS tumours, haematological malignancies, and solid tumours. Survivors had higher risk of neurodevelopmental, emotional, and behavioural disorders than population-based comparisons and siblings, and male survivors had higher risk for unipolar depression. Overall, siblings had no excess risk for mental disorders. However, our data suggest that siblings who were young at the time of cancer diagnosis of the survivor were at increased risk for mental disorders, whereas those older than 15 years at diagnosis were at a lower risk than the general population.
INTERPRETATION: Childhood cancer survivors should be followed up for mental late effects, especially those diagnosed in young age. Further, clinicians should also be aware that siblings who were young at the time of cancer diagnosis might be at increased risk for mental health disorders.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Long KA, Marsland AL, Alderfer MA
Cumulative family risk predicts sibling adjustment to childhood cancer.
Cancer. 2013; 119(13):2503-10 [PubMed] Free Access to Full Article Related Publications

BACKGROUND: Prolonged, intensive treatment regimens often disrupt families of children with cancer. Siblings are at increased risk for distress, but factors underlying this risk have received limited empirical attention. In this study, the authors examined associations between the family context and sibling distress.
METHODS: Siblings of children with cancer (ages 8-18 years; N = 209) and parents (186 mothers and 70 fathers) completed measures of sibling distress, family functioning, parenting, and parent post-traumatic stress. Associations between sibling distress and each family risk factor were evaluated. Then, family risks were considered simultaneously by calculating cumulative family risk index scores.
RESULTS: After controlling for sociodemographic covariates, greater sibling distress was associated with more sibling-reported problems with family functioning and parental psychological control, lower sibling-reported maternal acceptance, and lower paternal self-reported acceptance. When risk factors were considered together, the results supported a quadratic model in which associations between family risk and sibling distress were stronger at higher levels of risk.
CONCLUSIONS: The current findings support a contextual model of sibling adjustment to childhood cancer in which elevated distress is predicted by family risk factors, both alone and in combination.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Gilleland J, Reed-Knight B, Brand S, et al.
Assessment of family psychosocial functioning in survivors of pediatric cancer using the PAT2.0.
Psychooncology. 2013; 22(9):2133-9 [PubMed] Related Publications

BACKGROUND: This study aimed to examine clinical validity and utility of a screening measure for familial psychosocial risk, the Psychosocial Assessment Tool 2.0 (PAT2.0), among pediatric cancer survivors participating in long-term survivorship care.
METHODS: Caregivers (N=79) completed the PAT2.0 during their child's survivorship appointment. Caregivers also reported on family engagement in outpatient mental health treatment. Medical records were reviewed for treatment history and oncology provider initiated psychology consults.
RESULTS: The internal consistency of the PAT2.0 total score in this survivorship sample was strong. Psychology was consulted by the oncology provider to see 53% of participant families, and families seen by psychology had significantly higher PAT2.0 total scores than families without psychology consults. PAT2.0 total scores and corresponding subscales were higher for patients, parents, and siblings enrolled in outpatient mental health services since treatment completion. Results were consistent with psychosocial risk categories presented within the Pediatric Psychosocial Preventative Health Model. Fifty-one percent of families presenting for survivorship care scored in the "universal" category, 34% scored in the "targeted" category, and 15% scored in the "clinical" category.
CONCLUSIONS: Data indicate that the overall proportions of families experiencing "universal", "targeted", and "clinical" levels of familial distress may be constant from the time of diagnosis into survivorship care. Overall, the PAT2.0 demonstrated strong psychometric properties among survivors of pediatric cancer and shows promise as a psychosocial screening measure to facilitate more effective family support in survivorship care.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Barrera M, Alam R, D'Agostino NM, et al.
Parental perceptions of siblings' grieving after a childhood cancer death: a longitudinal study.
Death Stud. 2013; 37(1):25-46 [PubMed] Related Publications

We investigated longitudinally parental perceptions of siblings' bereavement after childhood cancer death. Parents were interviewed 6 months (n = 25) and 18 months (n = 75) post-death. Data are analyzed combined and over time. The following themes emerged: (a) expression of grief missing deceased child (verbally, crying), behavioral problems, difficulty understanding the meaning of death (pre-schoolers), and avoiding talking with parents about feelings (adolescents); (b) what helps siblings grief moving on, talking about deceased child and social support; (c) relationship with parents improved for most siblings; and (d) bond with deceased sibling: pretend-play (preschoolers), dreaming, and career choices (adolescents). Over time, themes reflected stability and change.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Lown EA, Mertens AC, Korcha RA, et al.
Prevalence and predictors of risky and heavy alcohol consumption among adult siblings of childhood cancer survivors.
Psychooncology. 2013; 22(5):1134-43 [PubMed] Free Access to Full Article Related Publications

OBJECTIVE: To describe alcohol consumption patterns and risk factors for risky and heavy alcohol use among siblings of childhood cancer survivors compared with survivors and national controls.
METHODS: Secondary analysis of prospectively collected data from two national surveys was performed including a cohort of 3034 adult siblings of childhood cancer survivors (age 18-56 years) and 10,398 adult childhood cancer survivors, both from the Childhood Cancer Survivor Study, plus 5712 adult participants from the population-based National Alcohol Survey. Cancer-related experiences, self-reported current health, and mental health were examined in relation to alcohol consumption patterns including heavy and risky drinking.
RESULTS: Adult siblings of childhood cancer survivors were more likely to be heavy drinkers (OR adj = 1.3; 1.0-1.6) and risky drinkers (OR adj = 1.3; 1.1-1.6) compared with controls from a national sample. Siblings were also more likely to drink at these two levels compared with survivors. Factors associated with heavy drinking among siblings included being 18-21 years old (OR adj = 2.9; 2.0-4.4), male (OR adj = 2.3; 1.7-3.0), having a high school education or less (OR adj = 2.4; 1.7-3.5), and drinking initiation at a young age (OR adj = 5.1; 2.5-10.3). Symptoms of depression, (OR adj = 2.1; 1.3-3.2), anxiety (OR adj = 1.9; 1.1-3.3), and global psychiatric distress (OR adj = 2.5; 1.5-4.3) were significantly associated with heavy alcohol use.
CONCLUSIONS: Siblings of children with cancer are more likely to be risky and heavy drinkers as adults compared with childhood cancer survivors or national controls. Early initiation of drinking and symptoms of psychological distress should be identified during early adolescence and effective sibling-specific interventions should be developed and made available for siblings of children with cancer.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Eilegård A, Steineck G, Nyberg T, Kreicbergs U
Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier.
Psychooncology. 2013; 22(3):683-91 [PubMed] Related Publications

BACKGROUND: The objective of this study was to assess long-term psychological distress in siblings who lost a brother or sister to cancer 2 to 9 years earlier, as compared with a control group of non-bereaved siblings from the general population.
METHODS: During 2009, we conducted a nationwide follow-up study in Sweden by using an anonymous study-specific questionnaire. Siblings who had lost a brother or sister to cancer between the years 2000 and 2007 and also a control group of non-bereaved siblings from the general population were invited to participate. The Hospital Anxiety and Depression Scale (HADS) was used to measure psychological distress, and to test for differences in the ordinal outcome responses between the groups, we used Wilcoxon-Mann-Whitney rank-sum test.
RESULTS: Among the bereaved siblings, 174/240 (73%) participated and 219/293 (75%) among the non-bereaved. Self-assessed low self-esteem (p = 0.002), difficulties falling asleep (p = 0.005), and low level of personal maturity (p = 0.007) at follow-up were more prevalent among bereaved siblings. However, anxiety (p = 0.298) and depression (p = 0.946), according to HADS, were similar.
CONCLUSION: Bereaved siblings are at increased risk of low self-esteem, low level of personal maturity and difficulties falling asleep as compared with non-bereaved peers. Yet, the bereaved were not more likely to report anxiety or depression.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Eilegård A, Steineck G, Nyberg T, Kreicbergs U
Bereaved siblings' perception of participating in research--a nationwide study.
Psychooncology. 2013; 22(2):411-6 [PubMed] Related Publications

OBJECTIVE: The objective of the present study is to examine bereaved siblings' perception of research participation.
METHODS: A Swedish nationwide study on avoidable and modifiable health care-related factors in paediatric oncology among bereaved siblings who lost a brother or sister to cancer between the years 2000 and 2007 was conducted. Data are presented as proportions, and the differences between groups were statistically tested at the 5% significant level using Fisher's exact test.
RESULTS: Out of 240 eligible siblings, 174 responded (73 %). None of the siblings (0/168) thought their participation would affect them negatively in the long term. However, 13% (21/168) stated it was a negative experience to fill out the questionnaire, whereas 84% (142/169) found it to be a positive experience. Women were more likely to report their participation as positive in a long-term perspective compared with men (p = 0.018).
CONCLUSIONS: None of the bereaved siblings in this Swedish nationwide study anticipated any long-term negative effect from their research participation. A majority reported it as positive to revisit their needs and experiences throughout their brother or sister's illness and death 2-9 years following the loss. We believe that the stepwise approach used in this study contributed to the high acceptance.

Related: Cancer Prevention and Risk Reduction

Buchbinder D, Casillas J, Krull KR, et al.
Psychological outcomes of siblings of cancer survivors: a report from the Childhood Cancer Survivor Study.
Psychooncology. 2011; 20(12):1259-68 [PubMed] Free Access to Full Article Related Publications

OBJECTIVE: To identify risk factors for adverse psychological outcomes among adult siblings of long-term survivors of childhood cancer.
METHODS: Cross-sectional, self-report data from 3083 adult siblings (mean age 29 years, range 18-56 years) of 5 + year survivors of childhood cancer were analyzed to assess psychological outcomes as measured by the Brief Symptom Inventory-18 (BSI-18). Sociodemographic and health data, reported by both the siblings and their matched cancer survivors, were explored as risk factors for adverse sibling psychological outcomes through multivariable logistic regression.
RESULTS: Self-reported symptoms of psychological distress, as measured by the global severity index of the BSI-18, were reported by 3.8% of the sibling sample. Less than 1.5% of siblings reported elevated scores on two or more of the subscales of the BSI-18. Risk factors for sibling depression included having a survivor brother (OR 2.22, 95% CI 1.42-3.55), and having a survivor with impaired general health (OR 2.15, 95% CI 1.18-3.78). Siblings who were younger than the survivor reported increased global psychological distress (OR 1.81, 95% CI 1.05-3.12), as did siblings of survivors reporting global psychological distress (OR 2.32, 95% CI 1.08-4.59). Siblings of sarcoma survivors reported more somatization than did siblings of leukemia survivors (OR 2.07, 95% CI 1.05-3.98).
CONCLUSIONS: These findings suggest that siblings of long-term childhood cancer survivors are psychologically healthy in general. There are, however, small subgroups of siblings at risk for long-term psychological impairment who may benefit from preventive risk-reduction strategies during childhood while their sibling with cancer is undergoing treatment.

Related: Leukemia Childhood Leukaemia Leukemia - Molecular Biology Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page Soft Tissue Sarcomas Childhood Soft Tissue Sarcomas Soft Tissue Sarcoma

Lu Q, Krull KR, Leisenring W, et al.
Pain in long-term adult survivors of childhood cancers and their siblings: a report from the Childhood Cancer Survivor Study.
Pain. 2011; 152(11):2616-24 [PubMed] Free Access to Full Article Related Publications

Little is known about pain among long-term adult survivors of childhood cancers. The study investigated pain prevalence in this population compared with sibling controls and examined pain-related risk factors. Three self-reported pain outcomes including pain conditions, prescription analgesics used, and pain attributed to cancer and treatment were assessed among 10,397 cancer survivors and 3034 sibling controls from the Childhood Cancer Survivor Study. Pain conditions (pain/abnormal sensation, migraines, and other headaches) were reported by 12.3%, 15.5%, and 20.5% of survivors, respectively; 16.7% of survivors reported use of prescription analgesics, and 21% attributed pain to cancer and treatment. Risks of reporting pain conditions and using prescription analgesics were higher among survivors than siblings, adjusting for sociodemographic factors. Younger age at diagnosis and a history of non-Hodgkin lymphoma, Wilms tumor, or neuroblastoma (compared to leukemia) were associated with greater risk of reporting pain conditions. A history of bone cancer or soft tissue sarcoma (compared to leukemia) was associated with greater risks of using prescription analgesics and cancer-related pain attribution. Non-brain-directed scatter irradiation was associated with elevated risk for migraines and cancer-related pain attribution. Female gender and lower educational attainment were associated with increased reports of all 3 pain outcomes; minority status, unemployment, and being single were associated with greater risks for reporting pain conditions. These findings contribute to the understanding of pain and associated risk factors among adult survivors of childhood cancer and suggest areas of focus for pain intervention.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Prchal A, Landolt MA
How siblings of pediatric cancer patients experience the first time after diagnosis: a qualitative study.
Cancer Nurs. 2012 Mar-Apr; 35(2):133-40 [PubMed] Related Publications

BACKGROUND: Siblings of pediatric cancer patients have a higher risk of developing emotional, behavioral, and social problems. However, little is known about specific experiences of this population in the first time after diagnosis.
OBJECTIVE: The purpose of this qualitative study was to describe the experiences of siblings of pediatric cancer patients in different areas of life in the first half-year after the cancer diagnosis.
METHODS: Semistructured interviews were conducted with 7 siblings of pediatric cancer patients (ages 11-18 years). Siblings were asked about their experiences in the hospital, in school, in their family, with peers, and with the ill child. Content analysis was used to derive important themes from the interviews.
RESULTS: Twenty-three categories of siblings' experiences were identified from the data.
CONCLUSIONS: In all areas of life, siblings reported difficulties, such as absence of parents, dealing with the ill child's or other patients' suffering and appearance, or impaired school achievement. But the siblings also mentioned important resources such as peer relationship, helpful coping strategies, and increased family cohesion.
IMPLICATIONS FOR PRACTICE: The results of the present study lead to a list of important topics in different areas of life that might be helpful for healthcare professionals to have in mind when meeting with siblings of cancer patients. Integration of these findings should serve to improve sibling support and develop standardized sibling interventions.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Hancock L
The camp experience for siblings of pediatric cancer patients.
J Pediatr Oncol Nurs. 2011 May-Jun; 28(3):137-42 [PubMed] Related Publications

Siblings of pediatric cancer patients experience difficulties coping and adapting to the experience of a cancer diagnosis. A variety of emotional and behavioral changes as well as somatic complaints have been reported. Children describe many negative changes after their sibling is diagnosed with cancer. Many social supports and therapeutic interventions have been proposed for siblings, one of which is a camp experience. The literature has demonstrated that camps have a positive impact and offer siblings of children with cancer a supportive peer environment. Camp encourages discussion with peers and health care providers and facilitates participation in activities that improve knowledge, social confidence, and self-esteem. Nurses can help siblings by recommending camp experiences, volunteering at camps, and adding a camp experiences to existing sibling support programs.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Zebrack BJ, Stuber ML, Meeske KA, et al.
Perceived positive impact of cancer among long-term survivors of childhood cancer: a report from the childhood cancer survivor study.
Psychooncology. 2012; 21(6):630-9 [PubMed] Free Access to Full Article Related Publications

OBJECTIVE: Investigations examining psychosocial adjustment among childhood cancer survivors have focused primarily on negative effects and psychopathology. Emergent literature suggests the existence of positive impact or adjustment experienced after cancer, as well. The purpose of this study is to examine the distribution of Perceived Positive Impact (PPI) and its correlates in young adult survivors of childhood cancer.
METHODS: 6425 survivors and 360 siblings completed a comprehensive health survey, inclusive of a modified version of the Post-traumatic Growth Inventory (PTGI) as a measure of PPI. Linear regression models were used to examine demographic, disease and treatment characteristics associated with PPI.
RESULTS: Survivors were significantly more likely than siblings to report PPI. Endorsement of PPI was significantly greater among female and non-white survivors, and among survivors exposed to at least one intense therapy, a second malignancy or cancer recurrence. Survivors diagnosed at older ages and fewer years since diagnosis were more likely to report PPI. Income, education and marital/relationship status appeared to have varied relationships to PPI depending upon the subscale being evaluated.
CONCLUSIONS: The existence and variability of PPI in survivors in this study suggest that individual characteristics, inclusive of race, gender, cancer type, intensity of treatment, age at diagnosis and time since diagnosis, have unique and specific associations with different aspects of perceived positive outcomes of childhood cancer.

Related: Cancer Prevention and Risk Reduction

Kamibeppu K, Sato I, Honda M, et al.
Mental health among young adult survivors of childhood cancer and their siblings including posttraumatic growth.
J Cancer Surviv. 2010; 4(4):303-12 [PubMed] Related Publications

BACKGROUND: Few studies have addressed the mental health status of young adult childhood cancer survivors (CCSs) and their siblings (SIBs). This paper focuses on depression, anxiety, posttraumatic stress symptoms (PTSS), and posttraumatic growth (PTG) among Japanese CCSs and their SIBs.
METHODS: Adolescent and young adult CCSs (n=185), in remission for more than 1 year, their SIBs (n=72), and general controls (CONTs) (n=1,000) completed anonymous self-report questionnaires for depression, anxiety, PTSS, and PTG. The physicians in charge also completed an anonymous disease/treatment data sheet.
RESULTS: CCSs were approximately 8 years old at diagnosis and approximately 23 years old at the time of the survey. Their diagnoses included leukemia (57%), lymphoma (12%), and solid tumors (30%). Thirty-eight percent underwent surgery and 25% received stem cell transplantation. No significant differences were found between CCSs and CONTs in terms of depression and anxiety. CCSs had significantly more PTSS and had remarkably greater PTG compared to CONTs. Although no significant differences were found between SIBs and CONTs regarding depression, anxiety, or PTSS, female SIBs exhibited greater PTG compared to female CONTs.
CONCLUSION: To empower CCSs, they should be evaluated periodically regarding PTSS and PTG and should be provided appropriate care and feedback. The fact that the mental health status of young adult SIBs was similar to CONTs at 15 years after their siblings' diagnoses may help reassure parents who worry about mental health among the siblings of an affected child during and after his/her treatment.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Alderfer MA, Long KA, Lown EA, et al.
Psychosocial adjustment of siblings of children with cancer: a systematic review.
Psychooncology. 2010; 19(8):789-805 [PubMed] Related Publications

OBJECTIVES: To promote a broader understanding of the psychosocial impact of childhood cancer on siblings, a systematic review was undertaken. Directions for future research are proposed and clinical strategies are suggested for addressing the needs of these children.
METHODS: Searches of Medline, PsycINFO and CINAHL revealed 65 relevant qualitative, quantitative, or mixed methods' papers published between 1997 and 2008. These papers were rated for scientific merit and findings were extracted for summary.
RESULTS: Siblings of children with cancer do not experience elevated mean rates of psychiatric disorders, but a significant subset experiences post-traumatic stress symptoms, negative emotional reactions (e.g. shock, fear, worry, sadness, helplessness, anger, and guilt), and poor quality of life in emotional, family, and social domains. In general, distress is greater closer to time of diagnosis. School difficulties are also evident within 2 years of diagnosis. Qualitative studies reveal family-level themes such as loss of attention and status as well as positive outcomes including increased sibling maturity and empathy.
CONCLUSIONS: Research regarding siblings of children with cancer continues to be methodologically limited. The conclusions of qualitative and quantitative studies differ considerably. We propose a research agenda to propel this field forward including greater attention to alterations in normative development (as opposed to psychiatric conditions), development of more appropriate quantitative measures, examination of potential moderators of adaptation, and use of prospective longitudinal designs. Siblings of children with cancer are a psychosocially at-risk group and should be provided with appropriate supportive services.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Lown EA, Goldsby R, Mertens AC, et al.
Alcohol consumption patterns and risk factors among childhood cancer survivors compared to siblings and general population peers.
Addiction. 2008; 103(7):1139-48 [PubMed] Free Access to Full Article Related Publications

AIMS: This study describes alcohol consumption among adult survivors of pediatric cancer compared to sibling controls and a national sample of healthy peers. Risk factors for heavy drinking among survivors are described.
DESIGN, SETTING AND PARTICIPANTS: Cross-sectional data were utilized from the Childhood Cancer Survivor Study including adult survivors of pediatric cancer (n = 10 398) and a sibling cohort (n = 3034). Comparison data were drawn from the National Alcohol Survey (n = 4774).
MEASUREMENT: Alcohol consumption, demographic, cancer diagnosis, treatment and psychosocial factors were measured.
FINDINGS: Compared to peers, survivors were slightly less likely to be risky [adjusted odds ratio (ORadj) = 0.9; confidence interval (CI) 0.8-1.0] and heavy drinkers (ORadj = 0.8; CI 0.7-0.9) and more likely to be current drinkers. Compared to siblings, survivors were less likely to be current, risky and heavy drinkers. Risk factors for survivors' heavy drinking included being age 18-21 years (ORadj = 2.0; 95% CI 1.5-2.6), male (ORadj = 2.1; 95% CI 1.8-2.6), having high school education or less (ORadj = 3.4; 95% CI 2.7-4.4) and drinking initiation before age 14 (ORadj = 6.9; 95% CI 4.4-10.8). Among survivors, symptoms of depression, anxiety or somatization, fair or poor self-assessed health, activity limitations and anxiety about cancer were associated with heavy drinking. Cognitively compromising treatment, brain tumors and older age at diagnosis were protective.
CONCLUSIONS: Adult survivors of childhood cancer show only a modest reduction in alcohol consumption compared to peers despite their more vulnerable health status. Distress and poorer health are associated with survivor heavy drinking. Screening for alcohol consumption should be instituted in long-term follow-up care and interventions among survivors and siblings should be established to reduce risk for early drinking.

Related: Cancer Prevention and Risk Reduction

Packman W, Mazaheri M, Sporri L, et al.
Projective drawings as measures of psychosocial functioning in siblings of pediatric cancer patients from the Camp Okizu study.
J Pediatr Oncol Nurs. 2008 Jan-Feb; 25(1):44-55 [PubMed] Related Publications

This research was conducted at a summer camp for siblings of children with cancer. Participants included 77 siblings (ages 6-17 years) and their parents. Before attending camp, 18 of the siblings had experienced the death of their brother or sister with cancer. Projective measures were administered before attending camp and 3 months after camp. These included the Human Figure Drawing (HFD) and the Kinetic Family Drawing-Revised (KFD-R). Siblings were administered both the HFD and KFD-R; parents were given the KFD-R. On the HFD, siblings' emotional distress scores decreased significantly pre- to postcamp. On the KFD-R, nonbereaved siblings and parents showed significant improvement in family environment scores. Bereaved siblings and parents also showed improvement (although nonsignificant). These results support Camp Okizu's effectiveness in increasing siblings' emotional well-being yet underscore the need to implement interventions to address family communication for both bereaved and nonbereaved families.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Massimo LM, Wiley TJ
Young siblings of children with cancer deserve care and a personalized approach.
Pediatr Blood Cancer. 2008; 50(3):708-10 [PubMed] Related Publications

The youngest siblings may be both emotionally vulnerable and often neglected members of the family of a childhood cancer patient. The prompt identification of signs of distress in these subjects allows trained caregivers to intervene with personalized, age-appropriate, attention, and care. A narrative approach, based on personalized listening, writings, and spontaneous drawings, can provide the means to elicit markers of psychological maladjustment in even the youngest of siblings. Two exemplary cases are reported to illustrate this approach.

Related: Leukemia Childhood Leukaemia Leukemia - Molecular Biology Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page Neuroblastoma

Wilkins KL, Woodgate RL
Transition: a conceptual analysis in the context of siblings of children with cancer.
J Pediatr Nurs. 2006; 21(4):256-65 [PubMed] Related Publications

Transition has been described by many disciplines. However, the concept of transition has yet to be applied to the sibling experience of childhood cancer. Understanding the transitions that siblings encounter is important because it will offer nurses new possibilities for enhancing siblings' outcomes. Accordingly, the purpose of this article is to provide a conceptual framework that will assist nurses in their efforts to promote healthy transitions in siblings of children with cancer. The method of concept analysis developed by Walker and Avant [Walker, L., & Avant, K. (1995). Concept analysis. In Strategies for theory construction in nursing (3rd ed.) (pp. 37-54). Norwalk, CT: Appleton and Lane.] is employed. The result is a definition of transition that is relevant and useful for research and clinical practice in pediatric oncology.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

Packman W, Greenhalgh J, Chesterman B, et al.
Siblings of pediatric cancer patients: the quantitative and qualitative nature of quality of life.
J Psychosoc Oncol. 2005; 23(1):87-108 [PubMed] Related Publications

This study used both quantitative and qualitative methodologies to assess the pediatric health-related quality of life (HRQOL) in siblings (n = 77) of cancer patients attending summer camp. On quantitative measures (Pediatric Quality of Life Inventory (PedsQL) parent and child versions), siblings reported statistically significant improvements in HRQOL from pre-to post camp. The parent sample, as a whole, did not report a statistically significant improvement in the siblings' HRQOL; however, statistically significant improvements were found when the analysis controlled for the responses of bereaved parents. On the qualitative measures (Sibling Qualitative Interview and Camp Okizu Satisfaction Surveys), both children and parents described the positive impact of camp. Using grounded theory, we identified the major themes and found that the positive emotional and social experiences captured by the quotes were paralleled in the quantitative findings of improved HRQOL in psychosocial domains on the PedsQL. These findings suggest the beneficial effects of camp as a psychological intervention and illustrate the value of integrating quantitative and qualitative methodological approaches in research.

Related: Cancer Prevention and Risk Reduction Children's Cancer Web: Home Page

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