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  • 1
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    Online Resource
    Cancer Prevention and Screening Practices of Siblings of Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study
    American Association for Cancer Research (AACR) ; 2012
    In:  Cancer Epidemiology, Biomarkers & Prevention Vol. 21, No. 7 ( 2012-07-01), p. 1078-1088
    Details
    In: Cancer Epidemiology, Biomarkers & Prevention, American Association for Cancer Research (AACR), Vol. 21, No. 7 ( 2012-07-01), p. 1078-1088
    Abstract: Background: To compare the skin and breast/cervical cancer prevention/screening practices of adult siblings of childhood cancer survivors with controls and to identify modifying factors for these practices. Methods: Cross-sectional, self-report data from 2,588 adult siblings of 5+ year survivors of childhood cancer were analyzed to assess cancer prevention/screening practices. Two age, sex, and race/ethnicity-matched samples (N = 5,915 and N = 37,789) of the Behavioral Risk Factor Surveillance System participants served as the comparison populations. Sociodemographic and cancer-related data were explored as modifying factors for sibling cancer prevention/screening practices through multivariable logistic regression. Results: Compared with controls, siblings were more likely to practice skin cancer prevention behaviors: use of protective clothing [OR, 2.85; 95% confidence interval (CI), 2.39–3.39], use of shade (OR, 2.11; 95% CI, 1.88–2.36), use of sunscreen (OR, 1.27; 95% CI, 1.14–1.40), and wearing a hat (OR, 1.77; 95% CI, 1.58–1.98). No differences were noted for breast/cervical cancer screening including mammography and Pap testing. Having less than a high school education and lack of health insurance were associated with diminished cancer prevention/screening behaviors. Survivor diagnosis, treatment intensity, adverse health, chronic health conditions, and second cancers were not associated with sibling cancer prevention/screening behaviors. Conclusions: Siblings of cancer survivors report greater skin cancer prevention practices when compared with controls; however, no differences were noted for breast/cervical cancer screening practices. Access to care and lack of education may be associated with decreased cancer prevention/screening behaviors. Interventions are needed to address these barriers. Impact: Research should be directed at understanding the impact of the cancer experience on sibling health behaviors. Cancer Epidemiol Biomarkers Prev; 21(7); 1078–88. ©2012 AACR.
    Type of Medium: Online Resource
    ISSN: 1055-9965 , 1538-7755
    URL: Article
    DOI: 10.1158/1055-9965.EPI-11-1095
    Language: English
    Publisher: American Association for Cancer Research (AACR)
    Publication Date: 2012
    detail.hit.zdb_id: 2036781-8
    detail.hit.zdb_id: 1153420-5
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  • 2
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    Inconsistent, uncoordinated, and reactive: The current state of sibling psychosocial care
    Wiley ; 2023
    In:  Pediatric Blood & Cancer Vol. 70, No. 2 ( 2023-02)
    Details
    In: Pediatric Blood & Cancer, Wiley, Vol. 70, No. 2 ( 2023-02)
    Abstract: Although providing sibling psychosocial services is a standard of care in pediatric oncology, initial survey research suggests that this standard is rarely achieved and siblings’ support needs remain unmet. Which sibling psychosocial services are available and how centers provide such services is unknown. To identify targetable services gaps, this qualitative study characterizes current sibling psychosocial care practices at select pediatric cancer centers across the United States. Procedure Semi‐structured interviews were conducted with a purposive sample of psychosocial care providers ( N  = 27) working across the United States in pediatric oncology centers of varied sizes. Interviews queried providers regarding sibling‐focused parent psychoeducation, psychosocial screening, comprehensive assessment, and psychosocial support offerings. Interview data were analyzed using Applied Thematic Analysis. Results Across cancer centers, sibling care practices did not align with consensus‐based recommendations. The nature and availability of sibling‐focused psychoeducation, screening, assessment, and support were variable between and within centers. Siblings themselves were largely absent from sibling psychosocial care, and care was rarely sibling‐specific. The flow of information about siblings was discontinuous and uncoordinated across the care continuum, resulting in psychosocial care provided reactively, typically in response to parental concerns. Conclusions Sibling psychosocial care provision falls short of established care recommendations, leaving sibling psychosocial needs unmet. Findings highlight the need for tools and strategies to facilitate the implementation of sibling psychosocial care across the care continuum, to support siblings’ psychosocial functioning across the life course.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    URL: Article
    DOI: 10.1002/pbc.v70.2
    DOI: 10.1002/pbc.30103
    Language: English
    Publisher: Wiley
    Publication Date: 2023
    detail.hit.zdb_id: 2130978-4
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  • 3
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    Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review
    Wiley ; 2018
    In:  Psycho-Oncology Vol. 27, No. 6 ( 2018-06), p. 1467-1479
    Details
    In: Psycho-Oncology, Wiley, Vol. 27, No. 6 ( 2018-06), p. 1467-1479
    Abstract: Siblings' psychosocial adjustment to childhood cancer is poorly understood. This systematic review summarizes findings and limitations of the sibling literature since 2008, provides clinical recommendations, and offers future research directions. Method MEDLINE/Pubmed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO were searched for articles related to siblings, psychosocial functioning, and pediatric cancer. After systematic screening, studies meeting inclusion criteria were rated for scientific merit, and findings were extracted and synthesized. In total, 102 studies were included (63 quantitative, 35 qualitative, 4 mixed‐methods). Results Methodological limitations are common. Mean levels of anxiety, depression, and general adjustment are similar across siblings and comparisons, but symptoms of cancer‐related posttraumatic stress are prevalent. School‐aged siblings display poorer academic functioning and more absenteeism but similar peer relationships as peers. Quality of life findings are mixed. Adult siblings engage in higher levels of risky health behaviors and may have poorer health outcomes than comparisons. Risk factors for poor sibling adjustment include lower social support, poorer family functioning, lower income, non‐White race, and shorter time since diagnosis, but findings are inconsistent. Qualitative themes include siblings' maturity, compassion, and autonomy, but also strong negative emotions, uncertainty, family disruptions, limited parental support, school problems, altered friendships, and unmet needs. Conclusion Despite methodological limitations, research indicates a strong need for sibling support. Clinical recommendations include identifying at‐risk siblings and developing interventions to facilitate family communication and increase siblings' social support, cancer‐related knowledge, and treatment involvement. Future longitudinal studies focusing on mechanisms and moderators of siblings' adjustment would inform timing and targets of psychosocial care.
    Type of Medium: Online Resource
    ISSN: 1057-9249 , 1099-1611
    URL: Issue
    URL: Article
    DOI: 10.1002/pon.v27.6
    DOI: 10.1002/pon.4669
    Language: English
    Publisher: Wiley
    Publication Date: 2018
    detail.hit.zdb_id: 1495115-0
    SSG: 5,2
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  • 4
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    Validation of the Psychosocial Assessment Tool Sibling Module Follow-Up Version
    Oxford University Press (OUP) ; 2023
    In:  Journal of Pediatric Psychology Vol. 48, No. 7 ( 2023-07-20), p. 636-644
    Details
    In: Journal of Pediatric Psychology, Oxford University Press (OUP), Vol. 48, No. 7 ( 2023-07-20), p. 636-644
    Abstract: Psychosocial screening is recommended to connect siblings of youth with cancer to psychosocial services, but the lack of validated sibling-specific screening tools is a barrier to routine screening. The current study aimed to validate and establish a clinical cutoff for the recently developed Psychosocial Assessment Tool (PAT) Sibling Module follow-up version to address this barrier. Methods Parents (N = 246) completed the PAT Sibling Module follow-up version for all siblings within their families ages 0–17 years (N = 458) at three time points between 6- and 24-month post-cancer diagnosis. For one target sibling within each family aged 8–17 years, parents also completed the Strengths and Difficulties Questionnaire, and the target sibling completed the Child PTSD Symptom Scale. Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity. Receiver operator characteristic analyses were used to establish a maximally sensitive and specific clinical cutoff. Results Internal consistency was acceptable for all age versions (Kuder-Richardson 20s ≥ 0.79), except for the ages 0–2 version, which had low internal consistency at 18 months post-diagnosis (Kuder-Richardson 20 = 0.57). Convergent (r values & gt;0.7, p values & lt;.001) and predictive (r values & gt;0.6, p values & lt;.001) validity were strong at each time point. An optimal clinical cutoff of 0.32 was identified (range: 0.00–1.00). Conclusions The PAT Sibling Module follow-up version is a reliable and valid screener for sibling psychosocial risk following cancer diagnosis. Validation of a sibling-specific screener and establishment of a clinical cutoff are necessary first steps to addressing siblings’ unmet psychosocial needs and improving trajectories of sibling functioning.
    Type of Medium: Online Resource
    ISSN: 0146-8693 , 1465-735X
    URL: Article
    DOI: 10.1093/jpepsy/jsad028
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2023
    detail.hit.zdb_id: 1470323-3
    SSG: 5,2
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  • 5
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    Bringing Together a Transdisciplinary Team to Create and Advance a Shared Vision for Research and Support for Siblings of Youth With Cancer
    SAGE Publications ; 2023
    In:  Journal of Pediatric Hematology/Oncology Nursing Vol. 40, No. 1 ( 2023-01), p. 34-42
    Details
    In: Journal of Pediatric Hematology/Oncology Nursing, SAGE Publications, Vol. 40, No. 1 ( 2023-01), p. 34-42
    Abstract: Background: Siblings of youth with cancer are at risk for psychosocial difficulties and report unmet needs. Supporting siblings is a psychosocial standard of care; however, many barriers prevent this standard from being fully achieved. Transdisciplinary team science has potential to generate novel, real-world solutions to complex research problems and can be beneficial to addressing sibling needs within pediatric hematology/oncology nursing. This process paper aims to present a guiding framework for transdisciplinary team science using the experiences of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC) as an exemplar. Methods: SPARCCC employed an established model of transdisciplinary team-based research, which consisted of four phases: development, consultation, implementation, and translation. This transdisciplinary team was comprised of international experts from a variety of disciplines, as well as siblings and families impacted by cancer. Results: SPARCCC held two summits, and team members developed ongoing collaborative efforts to advance advocacy, research, and support for siblings of youth with cancer. The team implemented the four phases of the transdisciplinary team-based framework and used an iterative process to build a shared perspective of the needs of siblings and take action. For instance, we completed a grant application, several manuscripts, and conference presentations to disseminate our findings and begin to advance a focused research agenda for sibling supportive care. Discussion: Transdisciplinary team science holds promise for tackling complex issues within pediatric hematology/oncology nursing research, particularly areas that are not well aligned with more traditional models and can be used to generate novel solutions.
    Type of Medium: Online Resource
    ISSN: 2752-7530 , 2752-7549
    URL: Article
    DOI: 10.1177/27527530221121727
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2023
    detail.hit.zdb_id: 3122666-8
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  • 6
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    Psychosocial care providers’ perspectives: Barriers to implementing services for siblings of children with cancer
    Wiley ; 2022
    In:  Pediatric Blood & Cancer Vol. 69, No. 2 ( 2022-02)
    Details
    In: Pediatric Blood & Cancer, Wiley, Vol. 69, No. 2 ( 2022-02)
    Abstract: Siblings of children with cancer are at increased risk for poor long‐term psychosocial outcomes. The standard of psychosocial care in pediatric oncology calling for sibling support is not routinely implemented, often leaving siblings with unmet psychosocial needs. Barriers to implementing the sibling standard may exist at multiple levels. This study addresses research gaps regarding multilevel barriers to supporting siblings at the health care system, oncology center, and family levels. Procedure Qualitative interviews were conducted with psychosocial care providers ( N  = 27; 18 psychologists, five social workers, three psychiatrists, and one child life specialist) employed at oncology centers within hospitals across the United States, varying in extent of sibling programming and center size. Interviews included questions about providers’ roles, oncology center characteristics, existing psychosocial sibling services, barriers to providing systematic sibling assessment, and ideas about how to overcome barriers. Data were analyzed using applied thematic analysis. Results Qualitative analysis revealed (a) barriers to providing sibling services occur at multiple levels (health care system, oncology center, family); (b) barriers at multiple levels frequently interact with one another; and (c) interacting barriers maintain a cycle: barriers to providing services contribute to limited provision of services, low service provision leads to limited utilization of existing services and underprioritization of siblings, and together this leads to siblings being off the radar, which further limits sibling service provision. Conclusion Addressing health care system and oncology center barriers to implementing sibling assessment and support may be important potential targets for interventions to help ensure that siblings receive needed psychosocial assessment and support.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    URL: Article
    DOI: 10.1002/pbc.v69.2
    DOI: 10.1002/pbc.29418
    Language: English
    Publisher: Wiley
    Publication Date: 2022
    detail.hit.zdb_id: 2130978-4
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  • 7
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    Online Resource
    Consensus Statements: The Family Management Style Framework and Its Use With Families of Children With Cancer
    SAGE Publications ; 2006
    In:  Journal of Pediatric Oncology Nursing Vol. 23, No. 1 ( 2006-01), p. 36-37
    Details
    In: Journal of Pediatric Oncology Nursing, SAGE Publications, Vol. 23, No. 1 ( 2006-01), p. 36-37
    Type of Medium: Online Resource
    ISSN: 1043-4542 , 1532-8457
    URL: Article
    DOI: 10.1177/1043454205283577
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2006
    detail.hit.zdb_id: 3122666-8
    detail.hit.zdb_id: 2052954-5
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  • 8
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    Supporting Siblings as a Standard of Care in Pediatric Oncology
    Wiley ; 2015
    In:  Pediatric Blood & Cancer Vol. 62, No. S5 ( 2015-12)
    Details
    In: Pediatric Blood & Cancer, Wiley, Vol. 62, No. S5 ( 2015-12)
    Abstract: In this study, evidence is provided for supporting siblings as a standard of care in pediatric oncology. Using Medline, PsycInfo, and CINAHL, a systematic search of articles published over the past two decades about siblings of children with cancer was conducted. A total of 125 articles, which were primarily descriptive studies, were evaluated by the four investigators using Grading of Recommendations Assessment, Development, and Evaluation (GRADE) criteria. There is moderate‐quality evidence, as well as support from community stakeholders, to justify a strong recommendation that siblings of children with cancer should be provided with psychosocial services and that parents and professionals are advised about how to meet siblings’ needs.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    URL: Article
    DOI: 10.1002/pbc.v62.S5
    DOI: 10.1002/pbc.25821
    Language: English
    Publisher: Wiley
    Publication Date: 2015
    detail.hit.zdb_id: 2130978-4
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  • 9
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    Online Resource
    Initial validation of a new psychosocial screener for siblings of youth with cancer: The Psychosocial Assessment Tool Sibling Modules
    Wiley ; 2022
    In:  Psycho-Oncology Vol. 31, No. 10 ( 2022-10), p. 1774-1781
    Details
    In: Psycho-Oncology, Wiley, Vol. 31, No. 10 ( 2022-10), p. 1774-1781
    Abstract: Psychosocial screening can facilitate the identification of families who have difficulty adjusting to and managing serious pediatric illness. Despite siblings' roles within the family and increased psychosocial risk, a systematic approach to screening siblings of youth with cancer remains rare. One barrier to systematic sibling screening is the lack of a validated screener. We aimed to establish initial validity of the new parent‐reported Psychosocial Assessment Tool (PAT) Sibling Modules for siblings ages 0–2, 3–4, 5–9, and 10+. Methods Families ( N  = 64) completed the PAT Sibling Modules and the Strengths and Difficulties Questionnaire (SDQ) regarding siblings' functioning at cancer diagnosis (13–23 items, depending on age version) and 6 months later (17–42 items). Cross‐sectional and longitudinal analyses examined internal consistency and convergent and predictive validity of the PAT Sibling Modules. Results Baseline and follow‐up versions of the modules have strong internal consistency (Kuder‐Richardson 20 range: 0.82–0.93) and convergent validity at diagnosis ( r ‐values ≥0.4, p‐ values 〈 0.01) and follow‐up ( r‐ values 〉 0.4, p ‐values 〈 0.05). Predictive validity was supported by significant correlations between baseline PAT Sibling Module scores and 6 month SDQ scores ( r  = 0.86, p   〈  0.001). Conclusions Findings provide initial evidence that the PAT Sibling Modules are valid measures of sibling psychosocial risk. Availability of a validated screener is a first step toward addressing siblings' unmet psychosocial needs.
    Type of Medium: Online Resource
    ISSN: 1057-9249 , 1099-1611
    URL: Issue
    URL: Article
    DOI: 10.1002/pon.v31.10
    DOI: 10.1002/pon.6024
    Language: English
    Publisher: Wiley
    Publication Date: 2022
    detail.hit.zdb_id: 1495115-0
    SSG: 5,2
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  • 10
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    Online Resource
    Parent decision‐making around the genetic testing of children for germline TP53 mutations
    Wiley ; 2015
    In:  Cancer Vol. 121, No. 2 ( 2015-01-15), p. 286-293
    Details
    In: Cancer, Wiley, Vol. 121, No. 2 ( 2015-01-15), p. 286-293
    Abstract: Li‐Fraumeni Syndrome (LFS) is a rare genetic cancer predisposition syndrome caused by germline TP53 mutations in which up to 20% of mutation carriers develop cancer during childhood. Although empirical evidence regarding benefits and risks of TP53 testing during childhood are lacking, most parents in our study decided easily in favor of testing and perceived a range of advantages that outweighed risks.
    Type of Medium: Online Resource
    ISSN: 0008-543X , 1097-0142
    URL: Issue
    URL: Article
    DOI: 10.1002/cncr.v121.2
    DOI: 10.1002/cncr.29027
    Language: English
    Publisher: Wiley
    Publication Date: 2015
    detail.hit.zdb_id: 1479932-7
    detail.hit.zdb_id: 2599218-1
    detail.hit.zdb_id: 2594979-2
    detail.hit.zdb_id: 1429-1
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