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Psychosocial services for primary immunodeficiency disorder families during hematopoietic cell transplantation: A descriptive study

Published online by Cambridge University Press:  18 September 2018

Christina Mangurian ,
Christopher Scalchunes ,
Jennie Yoo ,
Brent Logan ,
Tiffany Henderson ,
Sumathi Iyengar ,
Heather Smith  and
Morton J. Cowan
Christina Mangurian*
Affiliation:
University of California San Francisco Department of Psychiatry, San Francisco, CA
Christopher Scalchunes
Affiliation:
Immune Deficiency Foundation, Towson, MD
Jennie Yoo
Affiliation:
University of California San Francisco Department of Psychiatry, San Francisco, CA
Brent Logan
Affiliation:
Medical College of Wisconsin, Milwaukee, WI
Tiffany Henderson
Affiliation:
University of California San Francisco Department of Psychiatry, San Francisco, CA
Sumathi Iyengar
Affiliation:
Wiskott-Aldrich Foundation, Smyma, GA
Heather Smith
Affiliation:
SCID, Angels for Life Foundation, Lakeland, FL
Morton J. Cowan
Affiliation:
Pediatric Allergy, Immunology, Blood and Marrow Transplant Division, University of California San Francisco Benioff Children's Hospital, San Francisco, CA
*
Author for Correspondence: Christina Mangurian, M.D., M.A.S., UCSF Department of Psychiatry Weill Institute for Neurosciences, San Francisco General Hospital, 1001 Portero Ave, Suite 7M, San Francisco, CA 94110. E-mail: [email protected]
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Abstract

Objective

Caregivers for patients undergoing hematopoietic cell transplantation (HCT) are susceptible to significant psychosocial distress. This cross-sectional study aimed to describe psychosocial support services offered and used by caregivers of pediatric primary immune deficiency (PID) during HCT at 35 hospitals across North America.

Method

Caregivers of pediatric patients with PID were recruited by e-mail to participate in an anonymous 140-question survey instrument between April and May 2016 (N = 171).

Result

Of those meeting inclusion criteria (53%), family counseling services were only offered to fewer than half of caregivers (42%). Of the survey participants not offered counseling services, the majority desired family counseling (70%) and sibling counseling (73%). That said, when offered counseling, utilization rates were low, with 22% of caregivers using family counseling and none using sibling counseling.

Significance of results

These results indicate the need to offer and tailor counseling services for families throughout the HCT process. Further research should focus on reducing barriers to utilization of counseling services such as offering bedside counseling services, online modalities, and/or financial assistance.

Keywords

Hematopoietic cell transplantation (HCT)Psychosocial servicesCaregiversCounselingPrimary immune deficiency (PID)
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 4 , August 2019 , pp. 409 - 414
Copyright
Copyright © Cambridge University Press 2018 

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References

Ananth, P, Melvin, P, Berry, JG, et al. (2017) Trends in hospital utilization and costs among pediatric palliative care recipients. Journal of Palliative Medicine 20(9), 946–953Google Scholar
Bazregari, S, Azizi, G, Tavakol, M, et al. (2017) Evaluation of infectious and non-infectious complications in patients with primary immunodeficiency. Central European Journal of Immunology 42(4), 336–341.Google Scholar
Colletti, CJM, Wolfe-Christensen, C, Carpentier, MY, et al. (2008) The relationship of parental overprotection, perceived vulnerability, and parenting stress to behavioral, emotional, and social adjustment in children with cancer. Pediatric Blood & Cancer 51(2), 269–274.Google Scholar
Conte, T, Mitton, C, Trenaman, LM, et al. (2015) Effect of pediatric palliative care programs on health care resource utilization and costs among children with life-threatening conditions: A systematic review of comparative studies. CMAJ Open 3(1), E68–E75.Google Scholar
Cozon, GJN, Clerson, P, Dokhan, A, et al. (2018) In-depth interviews of patients with primary immunodeficiency who have experienced pump and rapid push subcutaneous infusions of immunoglobulins reveal new insights on their preference and expectations. Patient Preference and Adherence 12, 423–429.Google Scholar
Distelberg, BJ, Emerson, ND, Gavaza, P, et al. (2016) A cost-benefit analysis of a family systems intervention for managing pediatric chronic illness. Journal of Marital and Family Therapy 42(3), 371–382.Google Scholar
Dorsey, MJ, Dvorak, CC, Cowan, MJ, et al. (2017) Treatment of infants identified as having severe combined immunodeficiency by means of newborn screening. Journal of Allergy and Clinical Immunology 139(3), 733–742.Google Scholar
Dorstyn, D, Mathias, J, Denson, L, et al. (2012) Effectiveness of telephone counseling in managing psychological outcomes after spinal cord injury: A preliminary study. Archives of Physical Medicine and Rehabilitation 93(11), 2100–2108.Google Scholar
Drotar, D, Eckl, CL, Beitzel, M, et al. (1997) Psychosocial services for children and adolescents with hemophilia and their families: Results of a national survey. Children's Health Care 26(3), 137–150.Google Scholar
Duan-Porter, W, Van Houtven, CH, Mahanna, EP, et al. (2017) Internet use and technology-related attitudes of veterans and informal caregivers of veterans. Telemedicine Journal and E-Health 24(7).Google Scholar
Fife, BL, Von Ah, DM, Spath, ML, Weaver, MT, Yang, Z, Stump, T and Farag, S (2017) Preliminary efficacy of a brief family intervention to prevent declining quality of life secondary to parental bone marrow transplantation. Bone Marrow Transplantation 52(2), 285–291.Google Scholar
Griffith, LM, Cowan, MJ, Notarangelo, LD, Puck, JM, Buckley, RH, Candotti, F, … Shearer, WT (2009) Improving cellular therapy for primary immune deficiency diseases: Recognition, diagnosis, and management. The Journal of Allergy and Clinical Immunology 124(6), 1152–1160. https://doi.org/10.1016/j.jaci.2009.10.022Google Scholar
Kazak, AE, Boeving, CA, Alderfer, MA, Hwang, W-T and Reilly, A (2005) Posttraumatic stress symptoms during treatment in parents of children with cancer. Journal of Clinical Oncology 23(30), 7405–7410. https://doi.org/10.1200/JCO.2005.09.110Google Scholar
Kaza, AE, Cant, MC, Jensen, MM, McSherry, M, Rourke, MT, Hwang, WT, … Lange, BJ (2003) Identifying psychosocial risk indicative of subsequent resource use in families of newly diagnosed pediatric oncology patients. Journal of Clinical Oncology 21(17), 3220–3225. https://doi.org/10.1200/JCO.2003.12.156Google Scholar
Kwan, A and Puck, JM (2015) History and current status of newborn screening for severe combined immunodeficiency. Seminars in Perinatology 39(3), 194–205. /https://doi.org/10.1053/j.semperi.2015.03.004Google Scholar
Macginnitie, A, Aloi, F and Mishra, S (2011) Clinical characteristics of pediatric patients evaluated for primary immunodeficiency. Pediatric Allergy and Immunology 22(7), 671–675. https://doi.org/10.1111/j.1399-3038.2011.01167.xGoogle Scholar
Mittelman, MS and Bartels, SJ (2014) Translating research into practice: Case study of a community-based dementia caregiver intervention. Health Affairs (Project Hope) 33(4), 587–595. https://doi.org/10.1377/hlthaff.2013.1334Google Scholar
Packman, W, Weber, S, Wallace, J and Bugescu, N (2010) Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: A review. Bone Marrow Transplantation 45(7), 1134–1146. https://doi.org/10.1038/bmt.2010.74Google Scholar
Peris, TS, Rozenman, MS, Sugar, CA, McCracken, JT and Piacentini, J (2017) Targeted family intervention for complex cases of pediatric obsessive-compulsive disorder: A randomized controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry 56(12), 1034–1042. https://doi.org/10.1016/j.jaac.2017.10.008Google Scholar
Picard, C, Al-Herz, W, Bousfiha, A, Casanova, JL, Chatila, T, Conley, ME, … Gaspar, HB (2015) Primary immunodeficiency diseases: An update on the classification from the International Union of Immunological Societies Expert Committee for Primary Immunodeficiency 2015. Journal of Clinical Immunology 35(8), 696–726. https://doi.org/10.1007/s10875-015-0201-1Google Scholar
Rodrigue, JR, MacNaughton, K, Hoffmann, RG, Graham-Pole, J, Andres, JM, Novak, DA and Fennell, RS (1997) Transplantation in children: A longitudinal assessment of mothers’ stress, coping, and perceptions of family functioning. Psychosomatics 38(5), 478–486. https://doi.org/http://dx.doi.org/10.1016/S0033-3182(97)71425-7Google Scholar
Sowers, KL, Litwin, BA, Lee, ACW and Galantino, MLA (2018) Exercise perception and behaviors in individuals living with primary immunodeficiency disease. Journal of Clinical Immunology 38(2), 174–184. https://doi.org/10.1007/s10875-017-0472-9Google Scholar
Sultan, S, Rondeau, É, Levasseur, M-C, Dicaire, R, Decaluwe, H and Haddad, É (2017) Quality of life, treatment beliefs, and treatment satisfaction in children treated for primary immunodeficiency with SCIg. Journal of Clinical Immunology 37(5), 496–504. https://doi.org/10.1007/s10875-017-0409-3Google Scholar
Taskıran, G, Adanır, AS and Özatalay, E (2016). Living with the unknown: Posttraumatic stress disorder in pediatric bone marrow transplantation survivors and their mothers. Pediatric Hematology and Oncology 0018(April), 1–10. https://doi.org/10.3109/08880018.2016.1149749Google Scholar
Wagner, JL, Chaney, JM, Hommel, KA, Page, MC, Mullins, LL, White, MM and Jarvis, JN (2003) The influence of parental distress on child depressive symptoms in juvenile rheumatic diseases: The moderating effect of illness intrusiveness. Journal of Pediatric Psychology 28(7), 453–462. https://doi.org/10.1093/jpepsy/jsg036Google Scholar
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