Advertisement

Challenges in Shifting Management Responsibility From Parents to Adolescents With Sickle Cell Disease

      Highlights

      • Shifting management responsibility from parents to adolescents with SCD imposed adaptive-type challenges
      • Health care providers play a critical role in facilitating the progress toward more independent adolescent self-management
      • Future research is needed to develop and test interventions that facilitate shifting the management responsibility

      Purpose

      This study explored the challenges faced by adolescents with sickle cell disease (SCD) and their parents and the work they engage in to progressively shift from parent management to independent adolescent self-management.

      Design and methods

      A qualitative descriptive focus-group design with semi-structured interviews was used with adolescents (11–18 years) with SCD (HbSS genotype) and their parents/primary caregivers. Interviews were analyzed using content analysis.

      Results

      Two adolescent focus groups, with a total of 14 adolescents, and two parent focus groups, with a total of 15 parents, described adaptive challenges. Adolescents' adaptive challenges included mastering complex symptom management, communicating about SCD and symptoms, and maintaining control. Parents' adaptive challenges included giving over the complex management, communicating the management with the adolescent, balancing protection against risk with fostering independence, changing a comfortable rhythm, and releasing the adolescent into an "SCD-naive" world. Adolescents' adaptive work included pushing back at parents, defaulting back to parental care, stepping up with time, learning how SCD affects them, and educating friends about SCD. Parents' adaptive work included engaging the adolescent in open dialogue and co-managing with the adolescent.

      Conclusions

      Shifting management responsibility from parents to adolescents imposes adaptive challenges for both. Future research is needed to develop and test interventions that improve adaptive capacity in adolescents and parents.

      Practice implications

      Health care providers need to assess the parent–child relationship and their progress in shifting the management responsibility, facilitate discussions to arrive at a shared understanding of the challenges, and collaborate on adaptive work to address these challenges.

      Key words

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      References

        • Agency for Healthcare Research and Quality
        Few adolescents with special health care needs receive adequate transition from pediatric to adult-oriented health care.
        Date: 2005
        (Retrieved from)
        • Allen D
        • Channon S
        • Lowes L
        • Atwell C
        • Lane C
        Behind the scenes: The changing roles of parents in the transition from child to adult diabetes service.
        Diabetic Medicine. 2011; 28: 994-1000https://doi.org/10.1111/j.1464-5491.2011.03310.x
        • Andemariam B
        • Owarish-Gross J
        • Grady J
        • Boruchov D
        • Thrall RS
        • Hagstrom JN
        Identification of risk factors for an unsuccessful transition from pediatric to adult sickle cell disease care.
        Pediatric Blood & Cancer. 2014; 61: 697-701https://doi.org/10.1002/pbc.24870
        • Anderson RA
        • Bailey Jr., DE
        • Wu B
        • Corazzini K
        • McConnell ES
        • Thygeson NM
        • Docherty SL
        Adaptive leadership framework for chronic illness: Framing a research agenda for transforming care delivery..
        Advances in Nursing Science. 2015; 38: 83-95https://doi.org/10.1097/ANS.0000000000000063
        • Aujoulat I
        • Janssen M
        • Libion F
        • Charles AS
        • Struyf C
        • Smets F
        • Reding R
        Internalizing motivation to self-care: A multifaceted challenge for young liver transplant recipients.
        Qualitative Health Research. 2014; 24: 357-365https://doi.org/10.1177/1049732314523505
        • Becker G
        • Gates RJ
        • Newsom E
        Self-care among chronically ill African Americans: Culture, health disparities, and health insurance status.
        American Journal of Public Health. 2004; 94: 2066-2073https://doi.org/10.2105/AJPH.94.12.2066
        • Bell LE
        • Sawyer SM
        Transition of care to adult services for pediatric solid-organ transplant recipients.
        Pediatric Clinics of North America. 2010; 57: 593-610https://doi.org/10.1016/j.pcl.2010.01.007
        • Benton TD
        • Ifeagwu JA
        • Smith-Whitley K
        Anxiety and depression in children and adolescents with sickle cell disease.
        Current Psychiatry Reports. 2007; 9: 114-121
        • Bernard HR
        • Ryan GW
        Analyzing qualitative data: Systematic approaches.
        Sage, Los Angeles2010
        • Blum RW
        • Garell D
        • Hodgman CH
        • Jorissen TW
        • Okinow NA
        • Orr DP
        • Slap GB
        Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine.
        Journal of Adolescent Health. 1993; 14: 570-576
        • Bradley EH
        • Curry LA
        • Devers KJ
        Qualitative data analysis for health services research: Developing taxonomy, themes, and theory.
        Health Services Research. 2007; 42: 1758-1772https://doi.org/10.1111/j.1475-6773.2006.00684.x
        • Brousseau DC
        • Owens PL
        • Mosso AL
        • Panepinto JA
        • Steiner CA
        Acute care utilization and rehospitalizations for sickle cell disease.
        JAMA. 2010; 303: 1288-1294https://doi.org/10.1001/jama.2010.378
        • Brown RT
        • Connelly M
        • Rittle C
        • Clouse B
        A longitudinal examination predicting emergency room use in children with sickle cell disease and their caregivers.
        Journal of Pediatric Psychology. 2006; 31: 163-173https://doi.org/10.1093/jpepsy/jsj002
        • Buford TA
        Transfer of asthma management responsibility from parents to their school-age children.
        Journal of Pediatric Nursing. 2004; 19: 3-12
        • Burlew K
        • Telfair J
        • Colangelo L
        • Wright EC
        Factors that influence adolescent adaptation to sickle cell disease.
        Journal of Pediatric Psychology. 2000; 25: 287-299
        • Chilton R
        • Pires-Yfantouda R
        Understanding adolescent type 1 diabetes self-management as an adaptive process: A grounded theory approach.
        Psychology & Health. 2015; 30: 1486-1504https://doi.org/10.1080/08870446.2015.1062482
        • Darbari DS
        • Onyekwere O
        • Nouraie M
        • Minniti CP
        • Luchtman-Jones L
        • Rana S
        • Gordeuk V
        Markers of severe vaso-occlusive painful episode frequency in children and adolescents with sickle cell anemia.
        Journal of Pediatrics. 2012; 160: 286-290https://doi.org/10.1016/j.jpeds.2011.07.018
        • Dashiff C
        • Hardeman T
        • McLain R
        Parent-adolescent communication and diabetes: An integrative review.
        Journal of Advanced Nursing. 2008; 62: 140-162https://doi.org/10.1111/j.1365-2648.2007.04549.x
        • Dyson SM
        • Atkin K
        • Culley LA
        • Dyson SE
        • Evans H
        Sickle cell, habitual dys-positions and fragile dispositions: Young people with sickle cell at school.
        Sociology of Health & Illness. 2011; 33: 465-483https://doi.org/10.1111/j.1467-9566.2010.01301.x
        • Erskine R
        Adolescent boys with sickle cell disease: A qualitative study.
        Clinical Child Psychology and Psychiatry. 2012; 17: 17-31https://doi.org/10.1177/1359104511399843
        • Fosdal MB
        • Wojner-Alexandrov AW
        Clinical practice column. Events of hospitalization among children with sickle cell disease.
        Journal of Pediatric Nursing. 2007; 22: 342-346
        • Gibson F
        Conducting focus groups with children and young people: Strategies for success.
        Journal of Research in Nursing. 2007; 12: 473-483https://doi.org/10.1177/1744987107079791
        • Graff JC
        • Hankins JS
        • Hardy BT
        • Hall HR
        • Roberts RJ
        • Neely-Barnes SL
        Exploring parent-sibling communication in families of children with sickle cell disease.
        Issues in Comprehensive Pediatric Nursing. 2010; 33: 101-123https://doi.org/10.3109/01460861003663987
        • Hanna KM
        • Guthrie D
        Adolescents' perceived benefits and barriers related to diabetes self-management-Part 1.
        Issues in Comprehensive Pediatric Nursing. 2000; 23: 165-174
        • Hassell KL
        Population estimates of sickle cell disease in the U.S.
        American Journal of Preventive Medicine. 2010; 38: S512-S521https://doi.org/10.1016/j.amepre.2009.12.022
        • Haywood Jr., C
        • Tanabe P
        • Naik R
        • Beach MC
        • Lanzkron S
        The impact of race and disease on sickle cell patient wait times in the emergency department.
        American Journal of Emergency Medicine. 2013; 31: 651-656https://doi.org/10.1016/j.ajem.2012.11.005
        • Heary CM
        • Hennessy E
        The use of focus group interviews in pediatric health care research.
        Journal of Pediatric Psychology. 2002; 27: 47-57
        • Hsieh HF
        • Shannon SE
        Three approaches to qualitative content analysis.
        Qualitative Health Research. 2005; 15: 1277-1288
        • Institute of Medicine
        Unequal treatment: confronting racial and ethnic disparities in health care (full printed version).
        The National Academies Press, 2003 (Retrieved from http://www.nap.edu/catalog/10260/unequal-treatment-confronting-racial-and-ethnic-disparities-in-health-care)
        • Jenerette CM
        • Valrie CR
        The influence of maternal behaviors during childhood on self-efficacy in individuals with sickle cell disease.
        Journal of Family Nursing. 2010; 16: 422-434https://doi.org/10.1177/1074840710385000
        • Jerrell JM
        • Tripathi A
        • McIntyre RS
        Prevalence and treatment of depression in children and adolescents with sickle cell disease: A retrospective cohort study.
        Primary Care Companion to CNS Disorders. 2011; 13https://doi.org/10.4088/PCC.10m01063
        • Jordan L
        • Swerdlow P
        • Coates TD
        Systematic review of transition from adolescent to adult care in patients with sickle cell disease.
        Journal of Pediatric Hematology/Oncology. 2013; 35: 165-169https://doi.org/10.1097/MPH.0b013e3182847483
        • Karlsson A
        • Arman M
        • Wikblad K
        Teenagers with type 1 diabetes--A phenomenological study of the transition towards autonomy in self-management.
        International Journal of Nursing Studies. 2008; 45: 562-570https://doi.org/10.1016/j.ijnurstu.2006.08.022
        • Kelo M
        • Martikainen M
        • Eriksson E
        Self-care of school-age children with diabetes: An integrative review.
        Journal of Advanced Nursing. 2011; 67: 2096-2108https://doi.org/10.1111/j.1365-2648.2011.05682.x
        • Kennedy A
        • Gask L
        • Rogers A
        Training professionals to engage with and promote self-management.
        Health Education Research. 2005; 20: 567-578https://doi.org/10.1093/her/cyh018
        • Kieckhefer GM
        • Trahms CM
        Supporting development of children with chronic conditions: From compliance toward shared management.
        Pediatric Nursing. 2000; 26: 354-363
        • Labore N
        • Mawn B
        • Dixon J
        • Andemariam B
        Exploring transition to self-management within the culture of sickle cell disease.
        Journal of Transcultural Nursing. 2015; (Advance online publication)https://doi.org/10.1177/1043659615609404
        • Lanzkron S
        • Carroll CP
        • Haywood Jr., C
        Mortality rates and age at death from sickle cell disease: U.S., 1979-2005.
        Public Health Reports. 2013; 128: 110-116
        • Leonard BJ
        • Garwick A
        • Adwan JZ
        Adolescents' perceptions of parental roles and involvement in diabetes management.
        Journal of Pediatric Nursing. 2005; 20: 405-414https://doi.org/10.1016/j.pedn.2005.03.010
        • Lotstein DS
        • Inkelas M
        • Hays RD
        • Halfon N
        • Brook R
        Access to care for youth with special health care needs in the transition to adulthood.
        Journal of Adolescent Health. 2008; 43: 23-29https://doi.org/10.1016/j.jadohealth.2007.12.013
        • Miller JL
        • Meier ER
        Sickle cell disease in children.
        Drugs. 2012; 72: 895-906https://doi.org/10.2165/11632890-000000000-00000
      1. Miller, P. H. (1993). Vugotsky's theory and the contextualists. Theories of development psychology (3rd ed. ed., pp. 369–423). New York: W. H. Freeman.

        • Mitchell MJ
        • Lemanek K
        • Palermo TM
        • Crosby LE
        • Nichols A
        • Powers SW
        Parent perspectives on pain management, coping, and family functioning in pediatric sickle cell disease.
        Clinical Pediatrics. 2007; 46: 311-319https://doi.org/10.1177/0009922806293985
        • Newland JA
        Factors influencing independence in adolescents with sickle cell disease.
        Journal of Child and Adolescent Psychiatric Nursing. 2008; 21: 177-185https://doi.org/10.1111/j.1744-6171.2008.00149.x
        • Oliver-Carpenter G
        • Barach I
        • Crosby LE
        • Valenzuela J
        • Mitchell MJ
        Disease management, coping, and functional disability in pediatric sickle cell disease.
        Journal of the National Medical Association. 2011; 103: 131-137
        • Palladino DK
        • Helgeson VS
        Adolescents, parents and physicians: A comparison of perspectives on type 1 diabetes self-care.
        Canadian Journal of Diabetes. 2013; 37: 175-181https://doi.org/10.1016/j.jcjd.2013.02.057
        • Palmer DL
        • Berg CA
        • Wiebe DJ
        • Beveridge RM
        • Korbel CD
        • Upchurch R
        • Donaldson DL
        The role of autonomy and pubertal status in understanding age differences in maternal involvement in diabetes responsibility across adolescence.
        Journal of Pediatric Psychology. 2004; 29: 35-46
        • Paulukonis ST
        • Harris WT
        • Coates TD
        • Neumayr L
        • Treadwell M
        • Vichinsky E
        • Feuchtbaum LB
        Population based surveillance in sickle cell disease: Methods, findings and implications from the California registry and surveillance system in hemoglobinopathies project (RuSH).
        Pediatric Blood & Cancer. 2014; 61: 2271-2276https://doi.org/10.1002/pbc.25208
        • Quinn CT
        • Rogers ZR
        • McCavit TL
        • Buchanan GR
        Improved survival of children and adolescents with sickle cell disease.
        Blood. 2010; 115: 3447-3452https://doi.org/10.1182/blood-2009-07-233700
        • Richards L
        Readme first for a user's guide to qualitative methods.
        Sage, Thousand Oaks, California2013
        • Sattoe JNT
        • Hilberink SR
        • Peeters MAC
        • van Staa A
        Skills for growing up: Supporting autonomy in young people with kidney disease.
        Journal of Renal Care. 2014; 40: 131-139https://doi.org/10.1002/jorc.12046
        • Sawyer SM
        • Aroni RA
        Self-management in adolescents with chronic illness. What does it mean and how can it be achieved?.
        Medical Journal of Australia. 2005; 183: 405-409
        • Sawyer SM
        • Drew S
        • Yeo MS
        • Britto MT
        Adolescents with a chronic condition: challenges living, challenges treating.
        Lancet. 2007; 369: 1481-1489https://doi.org/10.1016/s0140-6736(07)60370-5
        • Schilling LS
        • Knafl KA
        • Grey M
        Changing patterns of self-management in youth with type I diabetes.
        Journal of Pediatric Nursing. 2006; 21: 412-424https://doi.org/10.1016/j.pedn.2006.01.034
        • Stewart DW
        • Shamdasani PN
        • Rook DW
        Focus groups: SAGE publications, ltd (2 nd ed.).
        SAGE Publications, Ltd., Thousand Oaks, CA2007
        • Sullivan-Bolyai S
        • Bova C
        • Johnson K
        • Cullen K
        • Jaffarian C
        • Quinn D
        • Gupta O
        Engaging teens and parents in collaborative practice: Perspectives on diabetes self-management.
        The Diabetes Educator. 2014; 40: 178-190https://doi.org/10.1177/0145721713520568
        • Telfair J
        • Alexander LR
        • Loosier PS
        • Alleman-Velez PL
        • Simmons J
        Providers' perspectives and beliefs regarding transition to adult care for adolescents with sickle cell disease.
        Journal of Health Care for the Poor and Underserved. 2004; 15: 443-461
        • Telfair J
        • Ehiri JE
        • Loosier PS
        • Baskin ML
        Transition to adult care for adolescents with sickle cell disease: Results of a national survey.
        International Journal of Adolescent Medicine and Health. 2004; 16: 47-64
        • Telfair J
        • Myers J
        • Drezner S
        Transfer as a component of the transition of adolescents with sickle cell disease to adult care: Adolescent, adult, and parent perspectives.
        Journal of Adolescent Health. 1994; 15: 558-565
        • Thygeson M
        • Morrissey L
        • Ulstad V
        Adaptive leadership and the practice of medicine: a complexity-based approach to reframing the doctor-patient relationship.
        Journal of Evaluation in Clinical Practice. 2010; 16: 1009-1015https://doi.org/10.1111/j.1365-2753.2010.01533.x
        • Treadwell M
        • Telfair J
        • Gibson RW
        • Johnson S
        • Osunkwo I
        Transition from pediatric to adult care in sickle cell disease: Establishing evidence-based practice and directions for research.
        American Journal of Hematology. 2011; 86: 116-120https://doi.org/10.1002/ajh.21880
        • Vygotsky LS
        Interaction between learning and development.
        in: Cole M. Mind in society: the development of higher psychological processes. Harvard University Press, Cambridge1978: 84-91
        • Weinger K
        • O'Donnell KA
        • Ritholz MD
        Adolescent views of diabetes-related parent conflict and support: A focus group analysis.
        The Journal of adolescent health : official publication of the Society for Adolescent Medicine. 2001; 29: 330-336
        • While AE
        • Mullen J
        Living with sickle cell disease: The perspective of young people.
        British Journal of Nursing. 2004; 13: 320-325
        • White PH
        • McManus MA
        • McAllister JW
        • Cooley WC
        A primary care quality improvement approach to health care transition.
        Pediatric Annals. 2012; 41: e1-e7https://doi.org/10.3928/00904481-20120426-07
        • Young MT
        • Lord JH
        • Patel NJ
        • Gruhn MA
        • Jaser SS
        Good cop, bad cop: Quality of parental involvement in type 1 diabetes management in youth.
        Current Diabetes Reports. 2014; 14: 546https://doi.org/10.1007/s11892-014-0546-5