Login Register Cart 0
Generic placeholder image

Current Diabetes Reviews

Editor-in-Chief

ISSN (Print): 1573-3998
ISSN (Online): 1875-6417

Back
Journal Home About Journal Editorial Board Journal Insight Current Issue Volumes/Issues
Subscribe
Systematic Review Article

A Systematic Review of Instruments Measuring the Division of Care Responsibilities between Children with Type 1 Diabetes and their Parents

Author(s): Jori Aalders*, Giesje Nefs, Esther Hartman, Linh A. Nguyen, Per Winterdijk, Edgar van Mil, Henk-Jan Aanstoot and Frans Pouwer

Volume 19, Issue 5, 2023

Published on: 27 July, 2022

Article ID: e100522204559 Pages: 35

DOI: 10.2174/1573399818666220510172511

Price: $65

Abstract

Background: The division of care responsibilities between parents and children with type 1 diabetes, and an optimal transfer of responsibilities from parent to child over time are assumed to be key for optimal diabetes outcomes during childhood and adolescence. However, an overview of instruments assessing this division as well as their psychometric qualities is currently lacking.

Objective: The study aims to 1) identify all existing instruments, 2) evaluate their psychometric properties, and 3) provide an overview of scoring methods.

Methods: Pubmed and PsycINFO were searched using a priori-defined search string. Peerreviewed studies in English using an instrument assessing the division of diabetes care responsibilities between children (6-18 years) and parents were included. In total, 84 of 725 articles qualified, covering 62 unique samples.

Results: Thirteen questionnaires were identified. The Diabetes Family Responsibility Questionnaire (DFRQ) was most frequently used across studies. Instructions, content and number of tasks, response options, and scoring methods varied across questionnaires. Recent studies often adapted questionnaires, contributing to the heterogeneity across measures. Overall, reporting and quality of psychometric properties was suboptimal.

Conclusion: The division of diabetes care responsibilities can be operationalized with various instruments, each having its strengths and weaknesses but all with limited psychometric support. To measure the division of diabetes care responsibilities more adequately, an updated version of the popular DFRQ or a new scale needs to be developed and evaluated.

Keywords: Type 1 diabetes mellitus, psychometrics, heterogeneity, DFRQ, division of diabetes, glycemic outcomes.

[1]
Scott LK. Developmental mastery of diabetes-related tasks in children. Nurs Clin North Am 2013; 48(2): 329-42.
[http://dx.doi.org/10.1016/j.cnur.2013.01.015] [PMID: 23659817]
[2]
Kyngäs H. Compliance of adolescents with chronic disease. J Clin Nurs 2000; 9(4): 549-56.
[http://dx.doi.org/10.1046/j.1365-2702.2000.00368.x] [PMID: 11261135]
[3]
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. Curr Diab Rep 2014; 14(11): 546.
[http://dx.doi.org/10.1007/s11892-014-0546-5] [PMID: 25212099]
[4]
Wiebe DJ, Gelfand D, Butler JM, et al. Longitudinal associations of maternal depressive symptoms, maternal involvement, and diabetes management across adolescence. J Pediatr Psychol 2011; 36(7): 837-46.
[http://dx.doi.org/10.1093/jpepsy/jsr002] [PMID: 21310723]
[5]
Helgeson VS, Reynolds KA, Siminerio L, Escobar O, Becker D. Parent and adolescent distribution of responsibility for diabetes self-care: Links to health outcomes. J Pediatr Psychol 2008; 33(5): 497-508.
[http://dx.doi.org/10.1093/jpepsy/jsm081] [PMID: 17848390]
[6]
Fortenberry KT, Berg CA, King PS, et al. Longitudinal trajectories of illness perceptions among adolescents with type 1 diabetes. J Pediatr Psychol 2014; 39(7): 687-96.
[http://dx.doi.org/10.1093/jpepsy/jsu043] [PMID: 24934247]
[7]
Pierce JS, Aroian K, Schifano E, et al. Health care transition for young adults with type 1 diabetes: Stakeholder engagement for defining optimal outcomes. J Pediatr Psychol 2017; 42(9): 970-82.
[http://dx.doi.org/10.1093/jpepsy/jsx076] [PMID: 28460055]
[8]
Anderson BJ, Auslander WF, Jung KC, Miller JP, Santiago JV. Assessing family sharing of diabetes responsibilities. J Pediatr Psychol 1990; 15(4): 477-92.
[http://dx.doi.org/10.1093/jpepsy/15.4.477] [PMID: 2258796]
[9]
Anderson BJ, Holmbeck G, Iannotti RJ, et al. Dyadic measures of the parent-child relationship during the transition to adolescence and glycemic control in children with type 1 diabetes. Fam Syst Health 2009; 27(2): 141-52.
[http://dx.doi.org/10.1037/a0015759] [PMID: 19630455]
[10]
Cameron FJ, Skinner TC, de Beaufort CE, et al. Are family factors universally related to metabolic outcomes in adolescents with Type 1 diabetes? Diabet Med 2008; 25(4): 463-8.
[http://dx.doi.org/10.1111/j.1464-5491.2008.02399.x] [PMID: 18294223]
[11]
Lancaster BM, Gadaire DM, Holman K, LeBlanc LA. Association between diabetes treatment adherence and parent-child agreement regarding treatment responsibilities. Fam Syst Health 2015; 33(2): 120-5.
[http://dx.doi.org/10.1037/fsh0000092] [PMID: 25689164]
[12]
Law GU, Walsh J, Queralt V, Nouwen A. Adolescent and parent diabetes distress in type 1 diabetes: The role of self-efficacy, perceived consequences, family responsibility and adolescent-parent discrepancies. J Psychosom Res 2013; 74(4): 334-9.
[http://dx.doi.org/10.1016/j.jpsychores.2012.12.009] [PMID: 23497836]
[13]
Lewandowski A, Drotar D. The relationship between parent-reported social support and adherence to medical treatment in families of adolescents with type 1 diabetes. J Pediatr Psychol 2007; 32(4): 427-36.
[http://dx.doi.org/10.1093/jpepsy/jsl037] [PMID: 17056638]
[14]
Miller VA, Drotar D. Discrepancies between mother and adolescent perceptions of diabetes-related decision-making autonomy and their relationship to diabetes-related conflict and adherence to treatment. J Pediatr Psychol 2003; 28(4): 265-74.
[http://dx.doi.org/10.1093/jpepsy/jsg014] [PMID: 12730283]
[15]
Austin S, Guay F, Senécal C, Fernet C, Nouwen A. Longitudinal testing of a dietary self-care motivational model in adolescents with diabetes. J Psychosom Res 2013; 75(2): 153-9.
[http://dx.doi.org/10.1016/j.jpsychores.2013.04.013] [PMID: 23915772]
[16]
Beal SJ, Riddle IK, Kichler JC, et al. The associations of chronic condition type and individual characteristics with transition readiness. Acad Pediatr 2016; 16(7): 660-7.
[http://dx.doi.org/10.1016/j.acap.2016.06.007] [PMID: 27345693]
[17]
Butner JE, Berg CA, Munion AK, et al. Coordination of self- and parental-regulation surrounding type I diabetes management in late adolescence. Ann Behav Med 2018; 52(1): 29-41.
[http://dx.doi.org/10.1007/s12160-017-9922-0] [PMID: 28585097]
[18]
Cemeroglu AP, Can A, Davis AT, et al. Comparison of the expectations of caregivers and children with type 1 diabetes mellitus for independence in diabetes care-related tasks. Endocr Pract 2014; 20(7): 629-37.
[http://dx.doi.org/10.4158/EP13472.OR] [PMID: 24449680]
[19]
Cheraghi F, Shamsaei F, Mortazavi SZ, Moghimbeigi A. The effect of family-centered care on management of blood glucose levels in adolescents with diabetes. Int J Community Based Nurs Midwifery 2015; 3(3): 177-86.
[PMID: 26171406]
[20]
Dashiff C, Vance D, Abdullatif H, Wallander J. Parenting, autonomy and self-care of adolescents with type 1 diabetes. Child Care Health Dev 2009; 35(1): 79-88.
[http://dx.doi.org/10.1111/j.1365-2214.2008.00892.x] [PMID: 18991978]
[21]
Doherty FM, Calam R, Sanders MR. Positive parenting program (triple P) for families of adolescents with type 1 diabetes: A randomized controlled trial of self-directed teen triple P. J Pediatr Psychol 2013; 38(8): 846-58.
[http://dx.doi.org/10.1093/jpepsy/jst046] [PMID: 23823086]
[22]
Ellis DA, Podolski CL, Frey M, Naar-King S, Wang B, Moltz K. The role of parental monitoring in adolescent health outcomes: Impact on regimen adherence in youth with type 1 diabetes. J Pediatr Psychol 2007; 32(8): 907-17.
[http://dx.doi.org/10.1093/jpepsy/jsm009] [PMID: 17426045]
[23]
Grover S, Bhadada S, Kate N, et al. Coping and caregiving experience of parents of children and adolescents with type-1 diabetes: An exploratory study. Perspect Clin Res 2016; 7(1): 32-9.
[http://dx.doi.org/10.4103/2229-3485.173776] [PMID: 26955574]
[24]
Markowitz JT, Volkening LK, Laffel LMB. Care utilization in a pediatric diabetes clinic: Cancellations, parental attendance, and mental health appointments. J Pediatr 2014; 164(6): 1384-9.
[http://dx.doi.org/10.1016/j.jpeds.2014.01.045] [PMID: 24612905]
[25]
Morrison S, Dashiff C, Abdullatif H, Moreland E. Parental separation anxiety and diabetes self-management of older adolescents: A pilot study. Pediatr Nurs 2012; 38(2): 88-95.
[PMID: 22685868]
[26]
Niba LL, Aulinger B, Mbacham WF, Parhofer KG. Predictors of glucose control in children and adolescents with type 1 diabetes: Results of a cross-sectional study in Cameroon. BMC Res Notes 2017; 10(1): 207.
[http://dx.doi.org/10.1186/s13104-017-2534-8] [PMID: 28606170]
[27]
Pate T, Klemenčič S, Battelino T, Bratina N. Fear of hypoglycemia, anxiety, and subjective well-being in parents of children and adolescents with type 1 diabetes. J Health Psychol 2019; 24(2): 209-18.
[http://dx.doi.org/10.1177/1359105316650931] [PMID: 27278280]
[28]
Pendley JS, Kasmen LJ, Miller DL, Donze J, Swenson C, Reeves G. Peer and family support in children and adolescents with type 1 diabetes. J Pediatr Psychol 2002; 27(5): 429-38.
[http://dx.doi.org/10.1093/jpepsy/27.5.429] [PMID: 12058007]
[29]
Rodriguez LM, Hassan KV, Rhodes J, McKay SV, Heptulla RA. The relationship between self-management and glycemic control in a cohort of children with type 1 and type 2 diabetes. J Diabetes Metab 2013; 4: 4.
[PMID: 25258699]
[30]
Shahpurwala Z. Youth with type 1 diabetes mellitus: An examination of adolescents’ illness perceptions and associated impact on health-related quality of life. Electronic Theses and Dissertations. The University of Mississippi, Mississippi, USA, 2015; pp. 1-144.746.
[31]
Higgins JP, Green S. Cochrane handbook for systematic reviews of interventions Version 5.1.0. The Cochrane Collaboration. 2011. Available from: www.handbook.cochrane.org
[32]
Mokkink LB, de Vet HCW, Prinsen CAC, et al. COSMIN risk of bias checklist for systematic reviews of patient-reported outcome measures. Qual Life Res 2018; 27(5): 1171-9.
[http://dx.doi.org/10.1007/s11136-017-1765-4] [PMID: 29260445]
[33]
Prinsen CAC, Mokkink LB, Bouter LM, et al. COSMIN guideline for systematic reviews of patient-reported outcome measures. Qual Life Res 2018; 27(5): 1147-57.
[http://dx.doi.org/10.1007/s11136-018-1798-3] [PMID: 29435801]
[34]
Terwee CB, Prinsen CAC, Chiarotto A, et al. COSMIN methodology for evaluating the content validity of patient-reported outcome measures: A Delphi study. Qual Life Res 2018; 27(5): 1159-70.
[http://dx.doi.org/10.1007/s11136-018-1829-0] [PMID: 29550964]
[35]
Howard MC. A review of exploratory factor analysis decisions and overview of current practices: What we are doing and how can we improve? Int J Hum Comput Interact 2016; 32(1): 51-62.
[http://dx.doi.org/10.1080/10447318.2015.1087664]
[36]
Agarwal S, Jawad AF, Miller VA. A multivariate model exploring the predictive value of demographic, adolescent, and family factors on glycemic control in adolescents with type 1 diabetes. Pediatr Diabetes 2016; 17(7): 500-8.
[http://dx.doi.org/10.1111/pedi.12331] [PMID: 26486450]
[37]
Anderson BJ, Vangsness L, Connell A, Butler D, Goebel-Fabbri A, Laffel LM. Family conflict, adherence, and glycaemic control in youth with short duration Type 1 diabetes. Diabet Med 2002; 19(8): 635-42.
[http://dx.doi.org/10.1046/j.1464-5491.2002.00752.x] [PMID: 12147143]
[38]
Berg CA, Butner JE, Butler JM, King PS, Hughes AE, Wiebe DJ. Parental persuasive strategies in the face of daily problems in adolescent type 1 diabetes management. Health Psychol 2013; 32(7): 719-28.
[http://dx.doi.org/10.1037/a0029427] [PMID: 22888825]
[39]
Beveridge RM, A Berg CJ, Wiebe DL, Palmer D. Mother and adolescent representations of illness ownership and stressful events surrounding diabetes. J Pediatr Psychol 2006; 31(8): 818-27.
[http://dx.doi.org/10.1093/jpepsy/jsj094] [PMID: 16371569]
[40]
Botello-Harbaum M, Nansel T, Haynie DL, Iannotti RJ, Simons-Morton B. Responsive parenting is associated with improved type 1 diabetes-related quality of life. Child Care Health Dev 2008; 34(5): 675-81.
[http://dx.doi.org/10.1111/j.1365-2214.2008.00855.x] [PMID: 18796059]
[41]
Butner J, Berg CA, Osborn P, et al. Parent-adolescent discrepancies in adolescents’ competence and the balance of adolescent autonomy and adolescent and parent well-being in the context of Type 1 diabetes. Dev Psychol 2009; 45(3): 835-49.
[http://dx.doi.org/10.1037/a0015363] [PMID: 19413435]
[42]
Caccavale LJ, Nansel TR, Quick V, Lipsky LM, Laffel LM, Mehta SN. Associations of disordered eating behavior with the family diabetes environment in adolescents with Type 1 diabetes. J Dev Behav Pediatr 2015; 36(1): 8-13.
[http://dx.doi.org/10.1097/DBP.0000000000000116] [PMID: 25493461]
[43]
Cameron LD, Young MJ, Wiebe DJ. Maternal trait anxiety and diabetes control in adolescents with type 1 diabetes. J Pediatr Psychol 2007; 32(7): 733-44.
[http://dx.doi.org/10.1093/jpepsy/jsl053] [PMID: 17264087]
[44]
Carey TC, Reid G, Ruggiero L, Horner J, Dubow E. The diabetes regimen responsibility scale: information on internal consistency and validity in a pediatric sample. Assessment 1997; 4(2): 207-9.
[http://dx.doi.org/10.1177/107319119700400209]
[45]
Cemeroglu AP, Timmer S, Turfe Z, et al. Differences in parental involvement in the care of children and adolescents with type 1 diabetes mellitus on multiple daily insulin injections versus continuous subcutaneous insulin infusion. J Pediatr Endocrinol Metab 2016; 29(3): 265-72.
[http://dx.doi.org/10.1515/jpem-2015-0030] [PMID: 26630689]
[46]
Cortina S, Repaske DR, Hood KK. Sociodemographic and psychosocial factors associated with continuous subcutaneous insulin infusion in adolescents with type 1 diabetes. Pediatr Diabetes 2010; 11(5): 337-44.
[http://dx.doi.org/10.1111/j.1399-5448.2009.00593.x] [PMID: 19761529]
[47]
Dashiff CJ. Self- and dependent-care responsibility of adolescents with IDDM and their parents. J Fam Nurs 2003; 9(2): 166-83.
[http://dx.doi.org/10.1177/1074840703009002004]
[48]
Delamater AM, Daigre AL, Marchante AN, Pulgarón ER, Patiño-Fernandez AM, Sanchez J. Intrinsic motivation in ethnic minority youth with type 1 diabetes. Child Health Care 2017; 46(3): 215-29.
[http://dx.doi.org/10.1080/02739615.2015.1124777] [PMID: 31548758]
[49]
Drotar D, Ievers C. Age differences in parent and child responsibilities for management of cystic fibrosis and insulin-dependent diabetes mellitus. J Dev Behav Pediatr 1994; 15(4): 265-72.
[http://dx.doi.org/10.1097/00004703-199408000-00008] [PMID: 7798372]
[50]
Friedemann-Sánchez G, Capistrant BD, Ron J, et al. Caregiving for children with type 1 diabetes and clinical outcomes in central India: The IDREAM study. Pediatr Diabetes 2018; 19(3): 527-33.
[http://dx.doi.org/10.1111/pedi.12567] [PMID: 28809093]
[51]
Geffken GR, Lehmkuhl H, Walker KN, et al. Family functioning processes and diabetic ketoacidosis in youths with type I diabetes. Rehabil Psychol 2008; 53(2): 231-7.
[http://dx.doi.org/10.1037/0090-5550.53.2.231]
[52]
Gowers SG, Jones JC, Kiana S, North CD, Price DA. Family functioning: A correlate of diabetic control? J Child Psychol Psychiatry 1995; 36(6): 993-1001.
[http://dx.doi.org/10.1111/j.1469-7610.1995.tb01345.x] [PMID: 7593406]
[53]
Grabill KM, Geffken GR, Duke D, et al. Family functioning and adherence in youth with type 1 diabetes: A latent growth model of glycemic control. Child Health Care 2010; 39(4): 279-95.
[http://dx.doi.org/10.1080/02739615.2010.515930]
[54]
Grey M, Jaser SS, Whittemore R, Jeon S, Lindemann E. Coping skills training for parents of children with type 1 diabetes: 12-month outcomes. Nurs Res 2011; 60(3): 173-81.
[http://dx.doi.org/10.1097/NNR.0b013e3182159c8f] [PMID: 21522034]
[55]
Hanna KM, Dashiff CJ, Stump TE, Weaver MT. Parent-adolescent dyads: Association of parental autonomy support and parent-adolescent shared diabetes care responsibility. Child Care Health Dev 2013; 39(5): 695-702.
[http://dx.doi.org/10.1111/j.1365-2214.2012.01373.x] [PMID: 22380684]
[56]
Hanna KM, Dimeglio LA, Fortenberry JD. Parent and adolescent versions of the diabetes-specific parental support for adolescents’ autonomy scale: Development and initial testing. J Pediatr Psychol 2005; 30(3): 257-71.
[http://dx.doi.org/10.1093/jpepsy/jsi036] [PMID: 15784922]
[57]
Hanna KM, DiMeglio LA, Fortenberry JD. Brief report: Initial testing of scales measuring parent and adolescent Perceptions of Adolescents’ Assumption of Diabetes Management. J Pediatr Psychol 2007; 32(3): 245-9.
[http://dx.doi.org/10.1093/jpepsy/jsl006] [PMID: 16798854]
[58]
Hanna KM, Guthrie D. Adolescents’ behavioral autonomy related to diabetes management and adolescent activities/rules. Diabetes Educ 2003; 29(2): 283-91.
[http://dx.doi.org/10.1177/014572170302900219] [PMID: 12728755]
[59]
Hanna KM, Juarez B, Lenss SS, Guthrie D. Parent-adolescent communication and support for diabetes management as reported by adolescents with type 1 diabetes. Issues Compr Pediatr Nurs 2003; 26(3): 145-58.
[http://dx.doi.org/10.1080/01460860390223871] [PMID: 12936698]
[60]
Holmes CS, Chen R, Streisand R, et al. Predictors of youth diabetes care behaviors and metabolic control: A structural equation modeling approach. J Pediatr Psychol 2006; 31(8): 770-84.
[http://dx.doi.org/10.1093/jpepsy/jsj083] [PMID: 16221954]
[61]
Hsin O, La Greca AM, Valenzuela J, Moine CT, Delamater A. Adherence and glycemic control among Hispanic youth with type 1 diabetes: Role of family involvement and acculturation. J Pediatr Psychol 2010; 35(2): 156-66.
[http://dx.doi.org/10.1093/jpepsy/jsp045] [PMID: 19491214]
[62]
Ingerski LM, Anderson BJ, Dolan LM, Hood KK. Blood glucose monitoring and glycemic control in adolescence: Contribution of diabetes-specific responsibility and family conflict. J Adolesc Health 2010; 47(2): 191-7.
[http://dx.doi.org/10.1016/j.jadohealth.2010.01.012] [PMID: 20638012]
[63]
Katz ML, Volkening LK, Butler DA, Anderson BJ, Laffel LM. Family-based psychoeducation and Care Ambassador intervention to improve glycemic control in youth with type 1 diabetes: A randomized trial. Pediatr Diabetes 2014; 15(2): 142-50.
[http://dx.doi.org/10.1111/pedi.12065] [PMID: 23914987]
[64]
Kaugars AS, Kichler JC, Alemzadeh R. Assessing readiness to change the balance of responsibility for managing type 1 diabetes mellitus: Adolescent, mother, and father perspectives. Pediatr Diabetes 2011; 12(6): 547-55.
[http://dx.doi.org/10.1111/j.1399-5448.2010.00737.x] [PMID: 21446924]
[65]
Kichler JC, Kaugars AS, Ellis J, Alemzadeh R. Exploring self-management characteristics in youths with type 1 diabetes mellitus: Does membership in a glycemic control category matter? Pediatr Diabetes 2010; 11(8): 536-43.
[http://dx.doi.org/10.1111/j.1399-5448.2010.00638.x] [PMID: 20144180]
[66]
Kichler JC, Kaugars AS, Marik P, Nabors L, Alemzadeh R. Effectiveness of groups for adolescents with type 1 diabetes mellitus and their parents. Fam Syst Health 2013; 31(3): 280-93.
[http://dx.doi.org/10.1037/a0033039] [PMID: 23957874]
[67]
Kichler JC, Seid M, Crandell J, et al. The Flexible Lifestyle Empowering Change (FLEX) intervention for self-management in adolescents with type 1 diabetes: Trial design and baseline characteristics. Contemp Clin Trials 2018; 66: 64-73.
[http://dx.doi.org/10.1016/j.cct.2017.12.006] [PMID: 29277316]
[68]
King PS, Berg CA, Butner J, Butler JM, Wiebe DJ. Longitudinal trajectories of parental involvement in Type 1 diabetes and adolescents’ adherence. Health Psychol 2014; 33(5): 424-32.
[http://dx.doi.org/10.1037/a0032804] [PMID: 23795709]
[69]
King PS, Berg CA, Butner J, et al. Longitudinal trajectories of metabolic control across adolescence: Associations with parental involvement, adolescents’ psychosocial maturity, and health care utilization. J Adolesc Health 2012; 50(5): 491-6.
[http://dx.doi.org/10.1016/j.jadohealth.2011.09.007] [PMID: 22525113]
[70]
Landers SE, Friedrich EA, Jawad AF, Miller VA. Examining the interaction of parental involvement and parenting style in predicting adherence in youth with type 1 diabetes. Fam Syst Health 2016; 34(1): 41-50.
[http://dx.doi.org/10.1037/fsh0000183] [PMID: 26866945]
[71]
Lee SL, Lo FS, Lee YJ, Chen BH, Wang RH. Predictors of glycemic control in adolescents of various age groups with type 1 diabetes. J Nurs Res 2015; 23(4): 271-9.
[http://dx.doi.org/10.1097/JNR.0000000000000096] [PMID: 26562458]
[72]
Lehmkuhl HD, Cammarata C, Meyer K, et al. Psychometric properties of a self-report measure of adherence to the diabetes regimen. Child Health Care 2009; 38(1): 76-90.
[http://dx.doi.org/10.1080/02739610802615914]
[73]
Leonard BJ, Kratz BJ, Skay CL, Rheinberger MM. Comparison of mother-father perceptions of their child’s self-management of diabetes. Issues Compr Pediatr Nurs 1997; 20(2): 69-87.
[http://dx.doi.org/10.3109/01460869709026879] [PMID: 9423384]
[74]
Leonard BJ, Skay CL, Rheinberger MM. Self-management development in children and adolescents with diabetes: The role of maternal self-efficacy and conflict. J Pediatr Nurs 1998; 13(4): 224-33.
[http://dx.doi.org/10.1016/S0882-5963(98)80049-3] [PMID: 9753908]
[75]
Mansfield AK, Addis ME, Laffel LM, Anderson BJ. Gender differences in reports of self-reliance for diabetes tasks in a pediatric sample. Int J Mens Health 2004; 3(1): 61-6.
[http://dx.doi.org/10.3149/jmh.0301.61]
[76]
Marker AM, Noser AE, Clements MA, Patton SR. Shared responsibility for type 1 diabetes care is associated with glycemic variability and risk of glycemic excursions in youth. J Pediatr Psychol 2018; 43(1): 61-71.
[http://dx.doi.org/10.1093/jpepsy/jsx081] [PMID: 28541572]
[77]
Marrero DG, Vandagriff JL, Kronz K, et al. Using telecommunication technology to manage children with diabetes: The Computer-Linked Outpatient Clinic (CLOC) Study. Diabetes Educ 1995; 21(4): 313-9.
[http://dx.doi.org/10.1177/014572179502100409] [PMID: 7621734]
[78]
McNabb WL, Quinn MT, Murphy DM, Thorp FK, Cook S. Increasing children’s responsibility for diabetes self-care: The in control study. Diabetes Educ 1994; 20(2): 121-4.
[http://dx.doi.org/10.1177/014572179402000206] [PMID: 7851224]
[79]
Moreland EC, Tovar A, Zuehlke JB, Butler DA, Milaszewski K, Laffel LM. The impact of physiological, therapeutic and psychosocial variables on glycemic control in youth with type 1 diabetes mellitus. J Pediatr Endocrinol Metab 2004; 17(11): 1533-44.
[http://dx.doi.org/10.1515/JPEM.2004.17.11.1533] [PMID: 15570991]
[80]
Mulvaney SA, Lilley JS, Cavanaugh KL, Pittel EJ, Rothman RL. Validation of the diabetes numeracy test with adolescents with type 1 diabetes. J Health Commun 2013; 18(7): 795-804.
[http://dx.doi.org/10.1080/10810730.2012.757394] [PMID: 23577642]
[81]
Murphy HR, Wadham C, Hassler-Hurst J, Rayman G, Skinner TC. Randomized trial of a diabetes self-management education and family teamwork intervention in adolescents with Type 1 diabetes. Diabet Med 2012; 29(8): e249-54.
[http://dx.doi.org/10.1111/j.1464-5491.2012.03683.x] [PMID: 22507080]
[82]
Murphy HR, Wadham C, Rayman G, Skinner TC. Approaches to integrating paediatric diabetes care and structured education: Experiences from the families, adolescents, and children’s teamwork study (FACTS). Diabet Med 2007; 24(11): 1261-8.
[http://dx.doi.org/10.1111/j.1464-5491.2007.02229.x] [PMID: 17894831]
[83]
Naar-King S, Ellis DA, Idalski A, Frey MA, Cunningham P. Multisystemic therapy decreases parental overestimation of adolescent responsibility for type 1 diabetes management in urban youth. Fam Syst Health 2007; 25(2): 178-89.
[http://dx.doi.org/10.1037/1091-7527.25.2.178]
[84]
Nakamura N, Sasaki N, Kida K, Matsuura N. Health-related and diabetes-related quality of life in Japanese children and adolescents with type 1 and type 2 diabetes. Pediatr Int 2010; 52(2): 224-9.
[http://dx.doi.org/10.1111/j.1442-200X.2009.002918.x] [PMID: 20500475]
[85]
Nansel TR, Rovner AJ, Haynie D, et al. Development and validation of the collaborative parent involvement scale for youths with type 1 diabetes. J Pediatr Psychol 2009; 34(1): 30-40.
[http://dx.doi.org/10.1093/jpepsy/jsn058] [PMID: 18567926]
[86]
Neumark-Sztainer D, Patterson J, Mellin A, et al. Weight control practices and disordered eating behaviors among adolescent females and males with type 1 diabetes: Associations with sociodemographics, weight concerns, familial factors, and metabolic outcomes. Diabetes Care 2002; 25(8): 1289-96.
[http://dx.doi.org/10.2337/diacare.25.8.1289] [PMID: 12145223]
[87]
Ott J, Greening L, Palardy N, Holderby A, DeBell WK. Self-efficacy as a mediator variable for adolescents’ adherence to treatment for insulin-dependent diabetes mellitus. Child Health Care 2000; 29(1): 47-63.
[http://dx.doi.org/10.1207/S15326888CHC2901_4]
[88]
Palmer DL, Berg CA, Butler J, et al. Mothers’, fathers’, and children’s perceptions of parental diabetes responsibility in adolescence: Examining the roles of age, pubertal status, and efficacy. J Pediatr Psychol 2009; 34(2): 195-204.
[http://dx.doi.org/10.1093/jpepsy/jsn073] [PMID: 18632787]
[89]
Palmer DL, Berg CA, Wiebe DJ, et al. The role of autonomy and pubertal status in understanding age differences in maternal involvement in diabetes responsibility across adolescence. J Pediatr Psychol 2004; 29(1): 35-46.
[http://dx.doi.org/10.1093/jpepsy/jsh005] [PMID: 14747364]
[90]
Reid GJ, Dubow EF, Carey TC, Dura JR. Contribution of coping to medical adjustment and treatment responsibility among children and adolescents with diabetes. J Dev Behav Pediatr 1994; 15(5): 327-35.
[http://dx.doi.org/10.1097/00004703-199410000-00003] [PMID: 7868700]
[91]
Robinson EM, Iannotti RJ, Schneider S, Nansel TR, Haynie DL, Sobel DO. Parenting goals: Predictors of parent involvement in disease management of children with type 1 diabetes. J Child Health Care 2011; 15(3): 199-209.
[http://dx.doi.org/10.1177/1367493511406567] [PMID: 21917595]
[92]
Rohan JM, Huang B, Pendley JS, et al. Predicting health resilience in pediatric type 1 diabetes: A test of the resilience model framework. J Pediatr Psychol 2015; 40(9): 956-67.
[http://dx.doi.org/10.1093/jpepsy/jsv061] [PMID: 26152400]
[93]
Siminerio LM, Charron-Prochownik D, Banion C, Schreiner B. Comparing outpatient and inpatient diabetes education for newly diagnosed pediatric patients. Diabetes Educ 1999; 25(6): 895-906.
[http://dx.doi.org/10.1177/014572179902500607] [PMID: 10711071]
[94]
Srinivasan S, Craig ME, Beeney L, et al. An ambulatory stabilisation program for children with newly diagnosed type 1 diabetes. Med J Aust 2004; 180(6): 277-80.
[http://dx.doi.org/10.5694/j.1326-5377.2004.tb05925.x] [PMID: 15012565]
[95]
Streisand R, Swift E, Wickmark T, Chen R, Holmes CS. Pediatric parenting stress among parents of children with type 1 diabetes: The role of self-efficacy, responsibility, and fear. J Pediatr Psychol 2005; 30(6): 513-21.
[http://dx.doi.org/10.1093/jpepsy/jsi076] [PMID: 16055489]
[96]
Telo GH, Volkening LK, Butler DA, Laffel LM. Salient characteristics of youth with type 1 diabetes initiating continuous glucose monitoring. Diabetes Technol Ther 2015; 17(6): 373-8.
[http://dx.doi.org/10.1089/dia.2014.0290] [PMID: 25749206]
[97]
Turner SL, Berg CA, Butner JE, Wiebe DJ. Attention problems as a predictor of type 1 diabetes adherence and metabolic control across adolescence. J Pediatr Psychol 2018; 43(1): 72-82.
[http://dx.doi.org/10.1093/jpepsy/jsx080] [PMID: 28505321]
[98]
Vesco AT, Anderson BJ, Laffel LM, Dolan LM, Ingerski LM, Hood KK. Responsibility sharing between adolescents with type 1 diabetes and their caregivers: Importance of adolescent perceptions on diabetes management and control. J Pediatr Psychol 2010; 35(10): 1168-77.
[http://dx.doi.org/10.1093/jpepsy/jsq038] [PMID: 20444852]
[99]
Weissberg-Benchell J, Glasgow A. The role of temperament in children with insulin-dependent diabetes mellitus. J Pediatr Psychol 1997; 22(6): 795-809.
[http://dx.doi.org/10.1093/jpepsy/22.6.795] [PMID: 9494318]
[100]
Weissberg-Benchell J, Goodman SS, Antisdel Lomaglio J, Zebracki K. The use of Continuous Subcutaneous Insulin Infusion (CSII): Parental and professional perceptions of self-care mastery and autonomy in children and adolescents. J Pediatr Psychol 2007; 32(10): 1196-202.
[http://dx.doi.org/10.1093/jpepsy/jsm050] [PMID: 17599966]
[101]
Weissberg-Benchell J, Nansel T, Holmbeck G, et al. Generic and diabetes-specific parent-child behaviors and quality of life among youth with type 1 diabetes. J Pediatr Psychol 2009; 34(9): 977-88.
[http://dx.doi.org/10.1093/jpepsy/jsp003] [PMID: 19270028]
[102]
Wiebe DJ, Berg CA, Korbel C, et al. Children’s appraisals of maternal involvement in coping with diabetes: Enhancing our understanding of adherence, metabolic control, and quality of life across adolescence. J Pediatr Psychol 2005; 30(2): 167-78.
[http://dx.doi.org/10.1093/jpepsy/jsi004] [PMID: 15681311]
[103]
Wiebe DJ, Chow CM, Palmer DL, et al. Developmental processes associated with longitudinal declines in parental responsibility and adherence to type 1 diabetes management across adolescence. J Pediatr Psychol 2014; 39(5): 532-41.
[http://dx.doi.org/10.1093/jpepsy/jsu006] [PMID: 24602891]
[104]
Wiebe DJ, Croom A, Fortenberry KT, et al. Parental involvement buffers associations between pump duration and metabolic control among adolescents with type 1 diabetes. J Pediatr Psychol 2010; 35(10): 1152-60.
[http://dx.doi.org/10.1093/jpepsy/jsq012] [PMID: 20219778]
[105]
Wilksch SM, Starkey K, Gannoni A, Kelly T, Wade TD. Interactive programme to enhance protective factors for eating disorders in girls with type 1 diabetes. Early Interv Psychiatry 2013; 7(3): 315-21.
[http://dx.doi.org/10.1111/eip.12012] [PMID: 23347796]
[106]
Wu YP, Hilliard ME, Rausch J, Dolan LM, Hood KK. Family involvement with the diabetes regimen in young people: The role of adolescent depressive symptoms. Diabet Med 2013; 30(5): 596-602.
[http://dx.doi.org/10.1111/dme.12117] [PMID: 23320523]
[107]
Wu YP, Rausch J, Rohan JM, et al. Autonomy support and responsibility-sharing predict blood glucose monitoring frequency among youth with diabetes. Health Psychol 2014; 33(10): 1224-31.
[http://dx.doi.org/10.1037/hea0000034] [PMID: 24467252]
[108]
Wysocki T, Nansel TR, Holmbeck GN, et al. Collaborative involvement of primary and secondary caregivers: Associations with youths’ diabetes outcomes. J Pediatr Psychol 2009; 34(8): 869-81.
[http://dx.doi.org/10.1093/jpepsy/jsn136] [PMID: 19112077]
[109]
Wysocki T, Taylor A, Hough BS, Linscheid TR, Yeates KO, Naglieri JA. Deviation from developmentally appropriate self-care autonomy. Association with diabetes outcomes. Diabetes Care 1996; 19(2): 119-25.
[http://dx.doi.org/10.2337/diacare.19.2.119] [PMID: 8718430]
[110]
Rubin R, Young-Hyman D, Peyrot M. Parent-child responsibility and conflict in diabetes care. Diabetes 1989; 38: 28.
[111]
Ruggiero L, Mindell J, Kairys S. A new measure for assessing diabetes self-management responsibility in pediatric populations: The diabetes regimen responsibility scale. Behav Therapist 1991; 14: 233-4.
[112]
Saletsky RD. Autonomy and mother-child relations in a sample of adolescents with insulin-dependent diabetes Doctoral Thesis. University of Birmingham, Birmingham, UK, 1992.
[113]
Wysocki T, Meinhold P, Cox DJ, Clarke WL. Survey of diabetes professionals regarding developmental changes in diabetes self-care. Diabetes Care 1990; 13(1): 65-8.
[http://dx.doi.org/10.2337/diacare.13.1.65] [PMID: 2298112]
[114]
Wysocki T, Meinhold PA, Abrams KC, et al. Parental and professional estimates of self-care independence of children and adolescents with IDDM. Diabetes Care 1992; 15(1): 43-52.
[http://dx.doi.org/10.2337/diacare.15.1.43] [PMID: 1737541]
[115]
Laffel LM, Connell A, Vangsness L, Goebel-Fabbri A, Mansfield A, Anderson BJ. General quality of life in youth with type 1 diabetes: Relationship to patient management and diabetes-specific family conflict. Diabetes Care 2003; 26(11): 3067-73.
[http://dx.doi.org/10.2337/diacare.26.11.3067] [PMID: 14578241]
[116]
Noorani M, Ramaiya K, Manji K. Glycaemic control in type 1 diabetes mellitus among children and adolescents in a resource limited setting in Dar es Salaam - Tanzania. BMC Endocr Disord 2016; 16(1): 29.
[http://dx.doi.org/10.1186/s12902-016-0113-y] [PMID: 27246505]
[117]
Hood KK, Butler DA, Anderson BJ, Laffel LMB. Updated and revised diabetes family conflict scale. Diabetes Care 2007; 30(7): 1764-9.
[http://dx.doi.org/10.2337/dc06-2358] [PMID: 17372149]
[118]
de Wit M, Winterdijk P, Aanstoot HJ, et al. Assessing diabetes-related quality of life of youth with type 1 diabetes in routine clinical care: The MIND Youth Questionnaire (MY-Q). Pediatr Diabetes 2012; 13(8): 638-46.
[http://dx.doi.org/10.1111/j.1399-5448.2012.00872.x] [PMID: 23173877]
[119]
Palmer DL, Osborn P, King PS, et al. The structure of parental involvement and relations to disease management for youth with type 1 diabetes. J Pediatr Psychol 2011; 36(5): 596-605.
[http://dx.doi.org/10.1093/jpepsy/jsq019] [PMID: 20360016]
[120]
Wiebe DJ, Berg CA, Fortenberry KT, et al. Physician recommendations about maternal involvement in adolescent diabetes management. Diabetes Care 2008; 31(4): 690-2.
[http://dx.doi.org/10.2337/dc07-1618] [PMID: 18184899]
[121]
Anderson B, Ho J, Brackett J, Finkelstein D, Laffel L. Parental involvement in diabetes management tasks: Relationships to blood glucose monitoring adherence and metabolic control in young adolescents with insulin-dependent diabetes mellitus. J Pediatr 1997; 130(2): 257-65.
[http://dx.doi.org/10.1016/S0022-3476(97)70352-4] [PMID: 9042129]
[122]
Schmidt C. Self-care in children with type 1 diabetes: A survey of mothers. MCN Am J Matern Child Nurs 2007; 32(4): 223-9.
[http://dx.doi.org/10.1097/01.NMC.0000281961.56207.9f] [PMID: 17667286]
[123]
Mokkink LB, Prinsen CA, Patrick DL, et al. COSMIN study design checklist for patient-reported outcome measurement instruments. Amsterdam, The Netherland 2019; pp. 1-31. Available from: https://www.cosmin.nl/wp-content/uploads/COSMIN-study-designing-checklist_final.pdf
[124]
U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health. Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims: Draft guidance. Health Qual Life Outcomes 2006; 4(1): 79.
[http://dx.doi.org/10.1186/1477-7525-4-79] [PMID: 17034633]

Rights & Permissions Print Cite
Article Metrics
23
2
© 2024 Bentham Science Publishers | Privacy Policy