Development of a Psychosocial Risk Screener for Siblings of Children With Cancer: Incorporating the Perspectives of Parents

被引:15
|
作者
Long, Kristin A. [1 ]
Pariseau, Emily M. [1 ]
Muriel, Anna C. [2 ,3 ]
Chu, Andrea [1 ]
Kazak, Anne E. [4 ,5 ]
Alderfer, Melissa A. [4 ,5 ]
机构
[1] Boston Univ, Boston, MA 02215 USA
[2] Dana Farber Canc Inst, Boston, MA 02115 USA
[3] Harvard Med Sch, Boston, MA USA
[4] Thomas Jefferson Univ, Nemours Childrens Hlth Syst, Philadelphia, PA 19107 USA
[5] Thomas Jefferson Univ, Sidney Kimmel Med Coll, Philadelphia, PA 19107 USA
关键词
cancer; family; psychosocial; screening; sibling; YOUNG-PEOPLE; FAMILY SCALE; UNMET NEEDS; CARE; INSTRUMENT; STANDARD; ILLNESS; ADVICE; IMPACT;
D O I
10.1093/jpepsy/jsy021
中图分类号
B844 [发展心理学(人类心理学)];
学科分类号
040202 ;
摘要
Objective Although many siblings experience distress after a child's cancer diagnosis, their psychosocial functioning is seldom assessed in clinical oncology settings. One barrier to systematic sibling screening is the lack of a validated, sibling-specific screening instrument. Thus, this study developed sibling-specific screening modules in English and Spanish for the Psychosocial Assessment Tool (PAT), a well-validated screener of family psychosocial risk. Methods A purposive sample of English- and Spanish-speaking parents of children with cancer (N=29) completed cognitive interviews to provide in-depth feedback on the development of the new PAT sibling modules. Interviews were transcribed verbatim, cleaned, and analyzed using applied thematic analysis. Items were updated iteratively according to participants' feedback. Data collection continued until saturation was reached (i.e., all items were clear and valid). Results Two sibling modules were developed to assess siblings' psychosocial risk at diagnosis (preexisting risk factors) and several months thereafter (reactions to cancer). Most prior PAT items were retained; however, parents recommended changes to improve screening format (separately assessing each sibling within the family and expanding response options to include "sometimes"), developmental sensitivity (developing or revising items for ages 0-2, 3-4, 5-9, and 10+ years), and content (adding items related to sibling-specific social support, global assessments of sibling risk, emotional/behavioral reactions to cancer, and social ecological factors such as family and school). Conclusions Psychosocial screening requires sibling-specific screening items that correspond to preexisting risk (at diagnosis) and reactions to cancer (several months after diagnosis). Validated, sibling-specific screeners will facilitate identification of siblings with elevated psychosocial risk.
引用
收藏
页码:693 / 701
页数:9
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