Improving Support to Siblings of Children With Cancer Through a Community-Academic Partnership

被引:4
作者
Oberoi, Anjali R. [1 ]
Towry, Lisa [2 ]
Eilenberg, Jenna Sandler [1 ]
Lun, Phyllis [1 ,5 ]
Lerro, Grace [2 ]
Alderfer, Melissa A. [3 ,4 ]
Long, Kristin A. [1 ]
机构
[1] Boston Univ, Dept Psychol & Brain Sci, 900 Commonwealth Ave,2nd Floor, Boston, MA 02215 USA
[2] Alexs Lemonade Stand Fdn, Wynnewood, PA USA
[3] Nemours Childrens Hlth Syst, Wilmington, DE USA
[4] Thomas Jefferson Univ, Sidney Kimmel Med Coll, Dept Pediat, Philadelphia, PA 19107 USA
[5] Univ Hong Kong, Sch Publ Hlth, Hong Kong, Peoples R China
关键词
childhood cancer; sibling; family; psychosocial support; community-academic partnership; EXPERIENCE; NEEDS;
D O I
10.1037/cpp0000280
中图分类号
B849 [应用心理学];
学科分类号
040203 ;
摘要
Objective: Siblings of children with cancer are a psychosocially at-risk group and have unmet needs that are typically not addressed within traditional hospital settings. The current study implemented a community-academic partnership model with SuperSibs-a nationwide, community-based, no-cost program for siblings of children with cancer, powered by Alex's Lemonade Stand Foundation-to evaluate and improve their sibling resources. Method: Researchers and Alex's Lemonade Stand Foundation staff partnered to plan and conduct research with siblings regarding desired support resources, with attention to the acceptability and feasibility of implementation. Siblings (N = 23) provided qualitative data regarding suggestions for new resources and feedback on existing and proposed SuperSibs programs. Qualitative data were analyzed using applied thematic analysis. Results: Siblings emphasize the importance of support that is meaningful, age-appropriate, consistently delivered and that offers autonomy. Siblings recommended revised SuperSibs program initiatives, such as yoga instruction, education for parents and teachers, and game-based interventions. Collaboration throughout the course of the research between researchers and Alex's Lemonade Stand Foundation staff yielded improvements to SuperSibs programming. Conclusion: Community-academic partnerships are useful in conducting impactful research that is directly translatable into community-based support. Recommendations continue to inform resource development and evaluation goals.
引用
收藏
页码:371 / 382
页数:12
相关论文
共 24 条
[1]  
Alderfer M. A., 2017, ANN C INT SOC PAED O
[2]  
Alderfer M.A., 2006, COMPREHENSIVE HDB CH, P53
[3]   Community-Academic Partnerships: A Systematic Review of the State of the Literature and Recommendations for Future Research [J].
Drahota, Amy ;
Meza, Rosemary D. ;
Brikho, Brigitte ;
Naaf, Meghan ;
Estabillo, Jasper A. ;
Gomez, Emily D. ;
Vejnoska, Sarah F. ;
Dufek, Sarah ;
Stahmer, Aubyn C. ;
Aarons, Gregory A. .
MILBANK QUARTERLY, 2016, 94 (01) :163-214
[4]   Supporting Siblings as a Standard of Care in Pediatric Oncology [J].
Gerhardt, Cynthia A. ;
Lehmann, Vicky ;
Long, Kristin A. ;
Alderfer, Melissa A. .
PEDIATRIC BLOOD & CANCER, 2015, 62 :S678-+
[5]  
Guest Greg., 2012, APPL THEMATIC ANAL, DOI [https://doi.org/10.4135/9781483384436, DOI 10.4135/9781483384436]
[6]   Research electronic data capture (REDCap)-A metadata-driven methodology and workflow process for providing translational research informatics support [J].
Harris, Paul A. ;
Taylor, Robert ;
Thielke, Robert ;
Payne, Jonathon ;
Gonzalez, Nathaniel ;
Conde, Jose G. .
JOURNAL OF BIOMEDICAL INFORMATICS, 2009, 42 (02) :377-381
[7]  
Houtzager BA, 2001, PSYCHO-ONCOL, V10, P315, DOI 10.1002/pon.528.abs
[8]   Review of community-based research: Assessing partnership approaches to improve public health [J].
Israel, BA ;
Schulz, AJ ;
Parker, EA ;
Becker, AB .
ANNUAL REVIEW OF PUBLIC HEALTH, 1998, 19 :173-202
[9]  
Kozlowska K., 2001, Clinical Child Psychology and Psychiatry, V6, P49, DOI DOI 10.1177/1359104501006001006
[10]   Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review [J].
Long, Kristin A. ;
Lehmann, Vicky ;
Gerhardt, Cynthia A. ;
Carpenter, Aubrey L. ;
Marsland, Anna L. ;
Alderfer, Melissa A. .
PSYCHO-ONCOLOGY, 2018, 27 (06) :1467-1479