Family Strategies to Support Siblings of Pediatric Hematopoietic Stem Cell Transplant Patients

被引:15
作者
White, Taylor E. [1 ]
Hendershot, Kristopher A. [2 ]
Dixon, Margie D. [3 ]
Pelletier, Wendy [5 ]
Haight, Ann [3 ,6 ]
Stegenga, Kristin [7 ]
Alderfer, Melissa A. [8 ,9 ]
Cox, Lydia [10 ]
Switchenko, Jeffrey M. [4 ,10 ]
Hinds, Pamela [11 ]
Pentz, Rebecca D. [3 ,10 ]
机构
[1] East Carolina Univ, Sch Med, Greenville, NC USA
[2] Rowan Univ, Cooper Med Sch, Camden, NJ USA
[3] Emory Univ, Emory Sch Med, Dept Hematol & Oncol, Atlanta, GA 30322 USA
[4] Emory Univ, Rollins Sch Publ Hlth, Dept Biostat & Bioinformat, Atlanta, GA 30322 USA
[5] Alberta Childrens Prov Gen Hosp, Haemotol Oncol Stem Cell Transplant Program, Calgary, AB, Canada
[6] Childrens Healthcare Atlanta, Aflac Canc & Blood Disorders Ctr, Dept Pediat, Atlanta, GA USA
[7] Childrens Mercy Hosp, Hematol Oncol Bone Marrow Transplantat, Kansas City, MO 64108 USA
[8] Childrens Hosp Philadelphia, Dept Psychol, Philadelphia, PA 19104 USA
[9] Univ Penn, Perelman Sch Med, Philadelphia, PA 19104 USA
[10] Winship Canc Inst, Atlanta, GA USA
[11] Childrens Natl Med Ctr, Nursing Res & Qual Outcomes, Washington, DC 20010 USA
基金
美国国家卫生研究院;
关键词
BONE-MARROW-TRANSPLANTATION; DONATION; CHILDREN; PARENTS; OTHERS; MINORS; CANCER; DONORS;
D O I
10.1542/peds.2016-1057
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
OBJECTIVE: To describe the strategies families report using to address the needs and concerns of siblings of children, adolescents, and young adults undergoing hematopoietic stem cell transplant (HSCT). METHODS: A secondary semantic analysis was conducted of 86 qualitative interviews with family members of children, adolescents, and young adults undergoing HSCT at 4 HSCT centers and supplemented with a primary analysis of 38 additional targeted qualitative interviews (23 family members, 15 health care professionals) conducted at the primary center. Analyses focused on sibling issues and the strategies families use to address these issues. RESULTS: The sibling issues identified included: (1) feeling negative effects of separation from the patient and caregiver(s); (2) experiencing difficult emotions; (3) being faced with additional responsibilities or burdens; (4) lacking information; and (5) feeling excluded. Families and health care providers reported the following strategies to support siblings: (1) sharing information; (2) using social support and help offered by family or friends; (3) taking siblings to the hospital; (4) communicating virtually; (5) providing special events or gifts or quality time for siblings; (6) offering siblings a defined role to help the family during the transplant process; (7) switching between parents at the hospital; (8) keeping the sibling's life constant; and, (9) arranging sibling meetings with a certified child life specialist or school counselor. CONCLUSIONS: Understanding the above strategies and sharing them with other families in similar situations can begin to address sibling issues during HSCT and can improve hospital-based, family-centered care efforts.
引用
收藏
页数:9
相关论文
共 41 条
[1]   Psychosocial adjustment of siblings of children with cancer: a systematic review [J].
Alderfer, Melissa A. ;
Long, Kristin A. ;
Lown, E. Anne ;
Marsland, Anna L. ;
Ostrowski, Nancy L. ;
Hock, Janet M. ;
Ewing, Linda J. .
PSYCHO-ONCOLOGY, 2010, 19 (08) :789-805
[2]  
American Cancer Society, WHAT HELPS KIDS CANC
[3]   The psychosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base [J].
Barlow, JH ;
Ellard, DR .
CHILD CARE HEALTH AND DEVELOPMENT, 2006, 32 (01) :19-31
[4]   SIBLINGS OF PEDIATRIC CANCER-PATIENTS - A POPULATION AT RISK [J].
CARRGREGG, M ;
WHITE, L .
MEDICAL AND PEDIATRIC ONCOLOGY, 1987, 15 (02) :62-68
[5]   Use of minors as bone marrow donors: Current attitude and management - A survey of 56 pediatric transplantation centers [J].
Chan, KW ;
Gajewski, JL ;
Supkis, D ;
Pentz, R ;
Champlin, R ;
Bleyer, WA .
JOURNAL OF PEDIATRICS, 1996, 128 (05) :644-648
[7]   RETHINKING TRANSPLANTATION BETWEEN SIBLINGS [J].
DWYER, J ;
VIG, E .
HASTINGS CENTER REPORT, 1995, 25 (05) :7-12
[8]   Patient- and Family-Centered Care and the Pediatrician's Role [J].
Eichner, Jerrold M. ;
Betts, James M. ;
Chitkara, Maribeth B. ;
Jewell, Jennifer A. ;
Lye, Patricia S. ;
Mirkinson, Laura J. .
PEDIATRICS, 2012, 129 (02) :394-404
[9]   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-+
[10]   WHAT ABOUT THE FAMILY [J].
HARDWIG, J .
HASTINGS CENTER REPORT, 1990, 20 (02) :5-10