Skip to main content
SpringerLink
Log in

Pediatric Hematopoietic Stem Cell Transplantation: Psychosocial Assessment and Care

  • Chapter
Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care

Abstract

This chapter reviews the role of psychosocial providers working with children, adolescents, and young adults undergoing a hematopoietic stem cell transplant (HSCT). Special attention is given to the psychosocial domains requiring assessment during the pre-HSCT psychological evaluation, including ability to consent/assent to treatment, psychosocial functioning, medical adherence, social support and stressors, and cognitive functioning. While there are few intervention studies aimed at the HSCT population, we extrapolate from the findings of pediatric chronic illness in discussing the best multidisciplinary intervention approaches to treat procedural pain and anxiety, behavioral issues, coping with medical isolation, pill-swallowing difficulties, and treatment nonadherence. Family functioning, including parent and sibling adjustment, is given additional consideration, with an expansive review of the unique experience of sibling donors. Pediatric HSCT resources and case examples are included.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
eBook
USD 16.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 129.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 159.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Achenbach TM, Rescorla LA (2001) Manual for the ASEBA school-age forms and profiles. University of Vermont Research Center for Children, Youth and Families, Burlington

    Google Scholar 

  • Ala. Code 22-8-9 (2012) Consent of minor to donation of bone marrow; Consent by parent or legal guardian

    Google Scholar 

  • American Academy of Pediatrics (2010) Policy statement – children as hematopoietic stem cell donors. Pediatrics 125(2):392–404

    Article  Google Scholar 

  • Bingen K, Kent MW, Rodday AM, Ratichek SJ, Kupst MJ, Parsons SK (2012) Children’s coping with hematopoietic stem cell transplant: results from the journeys to recovery study. Child Health Care 41(2):145–161

    Article  Google Scholar 

  • Butow P, Palmer S, Pai A, Goodenough B, Luckett T, King M (2010) Review of adherence-related issues in adolescents and young adults with cancer. J Clin Oncol 28(32):4800–4809

    Article  PubMed  Google Scholar 

  • Cairo MS, Heslop H (2008) Pediatric blood and marrow transplantation: state of the science. Bone Marrow Transplant 41:97

    Article  CAS  PubMed  Google Scholar 

  • Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, Silberman M, Yellen SB, Winicour P, Brannon J, Eckberg K, Lloyd S, Purl S, Blendowski C, Goodman M, Barnicle M, Stewart I, McHale M, Bonomi P, Kaplan E, Taylor S IV, Thomas CR Jr, Harris J (1993) The functional assessment of cancer therapy (FACT) scale: development and validation of the general measure. J Clin Oncol 11(3):570–579

    Google Scholar 

  • Chan KW, Gajewski JL, Supkis D, Pentz R, Champlin R, Bleyer WA (1996) Use of minors as bone marrow donors: current attitude and management as survey of 56 pediatric transplantation centers. J Pediatr 128(5):644–648

    Article  CAS  PubMed  Google Scholar 

  • Clarke SA, Eiser C, Skinner R (2008) Health-related quality of life in survivors of BMT for paediatric malignancy: a systematic review of the literature. Bone Marrow Transplant 42:73–82

    Article  PubMed  Google Scholar 

  • Da Silva FM, Jacob E, Nascimento LC (2010) Impact of childhood cancer on parents’ relationship: an integrative review. J Nurs Scholarsh 42(3):250–261

    Article  PubMed  Google Scholar 

  • Devine KA, Heckler CE, Katz ER, Fairclough DL, Phipps S, Sherman-Bien S, Dolgin MJ, Noll RB, Askins MA, Butler RW, Sahler OJ (2014) Evaluation of the psychometric properties of the pediatric parenting stress inventory (PPSI). Health Psychol 33:130–138

    Article  PubMed Central  PubMed  Google Scholar 

  • Diamond S, Lavallee DC (2010) Experience with a pill-swallowing enhancement aid. Clin Pediatr 49(4):391–393

    Article  Google Scholar 

  • Drotar D (2013) Strategies of adherence promotion in the management of pediatric chronic conditions. J Dev Behav Pediatr 34(9):716–729

    Article  PubMed  Google Scholar 

  • Embry L, Annett RD, Kunin-Baston A, Patel SK, Sands S, Reaman G, Noll RB (2012) Implementation of multi-site neurocognitive assessments within a pediatric cooperative group: can it be done? Pediatr Blood Cancer 59:536–539

    Article  PubMed  Google Scholar 

  • Folkman S, Lazarus R (1988) Ways of coping questionnaire. Mind Garden, Palo Alto

    Google Scholar 

  • Freund BL, Siegel K (1986) Problems in transition following bone marrow transplantation: psychosocial aspects. Am J Orthopsychiatry 56(2):244–252

    Article  CAS  PubMed  Google Scholar 

  • Furman W, Buhrmester D (1985) Sibling relationship questionnaire. Child Dev 56:448–461

    Article  CAS  PubMed  Google Scholar 

  • Holmes TH, Rabe RH (1967) The social readjustment rating scale. J Psychosom Res 11:213–218

    Article  CAS  PubMed  Google Scholar 

  • Jobe-Shields L, Alderfer MA, Barrera M, Vannatta K, Currier JM, Phipps S (2009) Parental depression and family environment predict distress in children prior to stem-cell transplantation. J Dev Behav Pediatr 30(2):140–146

    Article  PubMed Central  PubMed  Google Scholar 

  • Kaplan BJ, Steiger RA, Pope J, Marsh A, Sharp M, Crawford SG (2010) Successful treatment of pill-swallowing difficulties with head posture practice. Paediatr Child Health 15(5):e1–e5

    PubMed Central  PubMed  Google Scholar 

  • Kazak AE, Penati B, Brophy P, Himelstein B (1998) Pharmacologic and psychologic interventions for procedural pain. Pediatrics 102:59–66

    Article  CAS  PubMed  Google Scholar 

  • Kuppenheimer WG, Brown RT (2002) Painful procedures in pediatric cancer: a comparison of interventions. Clin Psychol Rev 22:753–786

    Article  PubMed  Google Scholar 

  • Lindwall JJ, Russell K, Huang Q, Zhang H, Vannatta K, Barrera M, Alderfer M, Phipps S (2014) Adjustment in parents of children undergoing stem cell transplantation. Biol Blood Marrow Transplant 20:543–548

    Article  PubMed Central  PubMed  Google Scholar 

  • MacLeod KD, Whitsitt SF, Mash EJ, Pelletier W (2003) Pediatric sibling donors of successful and unsuccessful hematopoietic stem cell transplants (HSCT): a qualitative study of their psychosocial experience. J Pediatr Psychol 28(4):223–231

    Article  PubMed  Google Scholar 

  • McCubbin HI, McCubbin MA, Patterson JM, Cauble AE, Wilson LR, Warwick W (1983) CHIP-coping health inventory for parents: an assessment of parental coping patterns in the care of the chronically ill child. J Marriage Fam 45:359–370

    Article  Google Scholar 

  • McGrady ME, Williams SN, Davies SM, Pai AL (2014) Adherence to outpatient oral medication regimens in adolescent hematopoietic stem cell transplant recipients. Eur J Oncol Nurs 18(2):140–144

    Article  PubMed Central  PubMed  Google Scholar 

  • Moos R, Moos B (1994) Family environment scale manual: development, applications, research, 3rd edn. Mind Garden, Palo Alto

    Google Scholar 

  • Mulhern RK, Butler RW (2006) Neuropsychological late effects. In: Brown RT (ed) Comprehensive handbook of childhood cancer and sickle cell disease: a biopsychosocial approach. Oxford University Press, New York, pp 262–278

    Google Scholar 

  • Packman WL, Crittenden MR, Rieger JB, Schaeffer E, Bongar B, Cowan MJ (1997) Siblings perceptions of the bone marrow transplantation process. J Psychosoc Oncol 15:81–105

    Article  Google Scholar 

  • Packman W, Weber S, Wallace J, Bugescu N (2010) Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review. Bone Marrow Transplant 45(7):1134–1146

    Article  CAS  PubMed  Google Scholar 

  • Pai ALH, Patino-Fernandez AM, McSherry M, Beele D, Alderfer MA, Reilly AT, Hwang WT, Kazak AE (2008) The psychosocial assessment tool (PAT2.0): psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. J Pediatr Psychol 33(2):50–62

    PubMed Central  PubMed  Google Scholar 

  • Parsons SK, Shih MC, Mayer DK, Barlow SE, Supran SE, Levy SL, Greenfield S, Kaplan SH (2005) Preliminary psychometric evaluation of the Child Health Ratings Inventories (CHRIs) and Disease-Specific Impairment Inventory-HSCT (DSII-HSCT) in parents and children. Qual Life Res 14:1613–1625

    Article  CAS  PubMed  Google Scholar 

  • Parsons SK, Mayer DK, Ratichek SJ, Rodday AM, Syrjala KL, Davies S, Patel SK, Schwartz L, Kupst MJ, Bingen K, Guinan EC, McTavish F, Stewart S, Terrin N, Gustafson DH (2013) An eHealth program for parents of pediatric hematopoietic stem cell transplant (HSCT) recipients enhances parents’ emotional functioning with continued use: results of the HSCT Comprehensive Health Enhancement Support System (CHESSTM) Study. Psycho-Oncology 22:100–101

    Google Scholar 

  • Pentz R (2006) Duty and altruism: alternative analyses of the ethics of siblings bone marrow donations. J Clin Ethics 17(3):227–230

    PubMed  Google Scholar 

  • Pentz RD, Haight AE, Noll RB, Barfield R, Pelletier W, Davies S, Alderfer MA, Hinds PS (2008) The ethical justification for minor sibling bone marrow donation: a case study. Oncologist 13:148–151

    Article  PubMed  Google Scholar 

  • Pentz RD, Alderfer MA, Pelletier W, Stegenga K, Haight AE, Hendershot KA, Dixon M, Fairclough D, Hinds P (2014) Unmet needs of siblings of pediatric stem cell transplant recipients. Pediatrics 133(5):e1156–e1162

    Article  PubMed Central  PubMed  Google Scholar 

  • Phipps S (2006) Psychosocial and behavioral issues in stem cell transplantation. In: Brown RT (ed) Comprehensive handbook of childhood cancer and sickle cell disease: a biopsychosocial approach. Oxford University Press, New York, pp 75–99

    Google Scholar 

  • Phipps S, Hinds PS, Channell S, Bell GL (1994) Measurement of behavioral, affective, and somatic responses to pediatric bone marrow transplantation: development of the BASES scale. J Pediatr Oncol Nurse 11:109–117

    Article  CAS  Google Scholar 

  • Phipps S, Dunavant M, Jayawardene D, Srivastiva DK (1999) Assessment of health- related quality of life in acute in-patient settings: use of the bases instrument in children undergoing bone marrow transplantation. Int J Cancer 12:18–24

    Article  CAS  Google Scholar 

  • Phipps S, Dunavant M, Lensing S, Rai SN (2005) Psychosocial predictors of distress in parents of children undergoing stem cell or bone marrow transplantation. J Pediatr Psychol 30(2):139–153

    Article  PubMed  Google Scholar 

  • Reynolds CR, Kamphaus RW (2004) BASC-2, behavior assessment system for children, 2nd edn. AGS Publishing, Circle Pines

    Google Scholar 

  • Ross LF, Glannon W (2006) A compounding of errors: the case of bone marrow donation between non-intimate siblings. J Clin Ethics 17:220–226

    PubMed  Google Scholar 

  • Sherman AC, Simonton S, Latif U, Nieder ML, Adams RH, Mehta P (2004) Psychosocial supportive care for children receiving stem cell transplantation: practice patterns across centers. Bone Marrow Transplant 34:169–174

    Article  CAS  PubMed  Google Scholar 

  • Spirito A, Stark L, Williams C (1988) Development of a brief coping checklist for use with pediatric populations. J Pediatr Psychol 13(4):555–574

    Article  CAS  PubMed  Google Scholar 

  • Stein REK, Riessman CK (1980) The development of the impact on family scale: preliminary findings. Med Care 18:465–472

    Article  CAS  PubMed  Google Scholar 

  • Streisand R, Rodrigue JR, Houck C, Graham-Pole J, Berlant N (2000) Brief report: Parents of children undergoing bone marrow transplantation: documenting stress and piloting a psychological intervention program. J Pediatr Psychol 25(5):331–337

    Article  CAS  PubMed  Google Scholar 

  • Syse A, Loge JH, Lyngstad TH (2010) Does childhood cancer affect parental divorce rates? A population-based study. J Clin Oncol 28(5):872–877

    Article  PubMed  Google Scholar 

  • Tadmor CS, Rosenkranz R, Ben-Arush MW (2012) Education in pediatric oncology: learning and reintegration into school. In: Kreitler S, Ben-Arush MW, Martin A (eds) Pediatric psycho-oncology: psychosocial aspects and clinic interventions, 2nd edn. Wiley-Blackwell, Chichester

    Google Scholar 

  • Tanzi EM (2011) Health-related quality of life of hematopoietic stem cell transplant childhood survivors: state of the science. J Pediatr Oncol Nurs 28(4):191–202

    Article  PubMed  Google Scholar 

  • Tobin DL, Holroyd KA, Reynolds RVC (1984) User’s manual for the coping strategies inventory. Ohio University, Department of Psychology, Athens

    Google Scholar 

  • Varni JW, Seid M, Kurtin PS (2001) PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generica core scales in health and patient populations. Med Care 39:800–812

    Article  CAS  PubMed  Google Scholar 

  • Vrijmoet-Wiersma CMJ, Kolk AM, Grootenhuis MA, Spek EM, van Klink JMM, Egeler RM, Bredius RGM, Koopman HM (2009) Child and parental adaptation to pediatric stem cell transplantation. Support Care Cancer 17:707–714

    Article  PubMed  Google Scholar 

  • Wechsler D (2004) The Wechsler intelligence scale for children, 4th edn. Pearson Assessment, London

    Google Scholar 

  • Wechsler D (2011) Wechsler abbreviated scale of intelligence, 2nd edn. Pearson Assessment, London

    Google Scholar 

  • Weisz V (1992) Psycholegal issues in sibling bone marrow donation. Ethics Behav 2:185–201

    Article  PubMed  Google Scholar 

  • Weithorn LA, Campbell SB (1982) The competency of children and adolescents to make informed treatment decisions. Child Dev 53:1589–1598

    Article  CAS  PubMed  Google Scholar 

  • Wiener LS, Steffen-Smith E, Wayne AS (2007) Hematopoietic stem cell donation in children: a review of the sibling donor experience. J Psychosoc Oncol 25:45–66

    Article  PubMed Central  PubMed  Google Scholar 

  • Wiener LS, Steffen-Smith E, Battles HB, Wayne A, Love CP, Fry T (2008) Sibling stem cell donor experiences at a single institution. Psychooncology 17:304–307

    Article  PubMed Central  PubMed  Google Scholar 

  • Wilkins KL, Hons BS, Woodgate RL (2007) An interruption in family life: siblings’ lived experience as they transition through the pediatric bone marrow transplantation trajectory. Oncol Nurs Forum 34(2):28–35

    Article  Google Scholar 

  • Wilkinson GS, Robertson GJ (2006) Wide range achievement test four professional manual. Psychological Assessment Resources, Lutz

    Google Scholar 

  • Wis. Stat. 146.34 (2012) Donation of bone marrow by a minor.

    Google Scholar 

  • Zhang M, Davies SM, Camitta BM, Logan B, Tiedemann K, Eapen M (2012) Comparison of outcomes after HLA-matched sibling and unrelated donor transplantation for children with high-risk acute lymphoblastic leukemia. Biol Blood Marrow Transplant 18:1204–1210

    Article  PubMed Central  PubMed  Google Scholar 

  • Zimet GD, Dahlem NW, Zimet SG, Farley GK (1988) The multidimensional scale of perceived social support. J Pers Assess 52:30–41

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Division of Hematology/Oncology/Blood and Marrow Transplant, Department of Pediatrics, Medical College of Wisconsin, 8701 Watertown Plank Road, Milwaukee, WI, 53226, USA

    Kristin Bingen PhD & Jennifer A. Hoag PhD

Authors
  1. Kristin Bingen PhD
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Jennifer A. Hoag PhD
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Kristin Bingen PhD .

Editor information

Editors and Affiliations

  1. Hemat. Oncol. Massachusetts General Hosp, Div. of Child & Adol. Psychiatry & Pedia, Boston, Massachusetts, USA

    Annah N. Abrams

  2. Dana-Farber Cancer Institute, Depart. of Psychosocial Oncol. & Palliat, Boston, Massachusetts, USA

    Anna C. Muriel

  3. National Cancer Instit. Center for Cance, Pediatric Oncology Branch , Bethesda, Maryland, USA

    Lori Wiener

Rights and permissions

Reprints and permissions

Copyright information

© 2016 Springer International Publishing Switzerland

About this chapter

Cite this chapter

Bingen, K., Hoag, J.A. (2016). Pediatric Hematopoietic Stem Cell Transplantation: Psychosocial Assessment and Care. In: Abrams, A., Muriel, A., Wiener, L. (eds) Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care. Springer, Cham. https://doi.org/10.1007/978-3-319-21374-3_13

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-21374-3_13

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-21373-6

  • Online ISBN: 978-3-319-21374-3

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation