ORIGINAL ARTICLE
Systematic review of sociodemographic representation and cultural responsiveness in psychosocial and behavioral interventions with adolescents with type 1 diabetes
在青少年1型糖尿病患者社会心理与行为干预研究中有关社会人口统计学特征以及文化反应能力的系统综述
Jennifer Morone,
Corresponding Author
Jennifer Morone
School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania
Correspondence
Jennifer Morone, School of Nursing, University of Pennsylvania, Fagin Hall 418 Curie Boulevard, Philadelphia, PA 19104-4217.
Email: [email protected]
Search for more papers by this authorJennifer Morone,
Corresponding Author
Jennifer Morone
School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania
Correspondence
Jennifer Morone, School of Nursing, University of Pennsylvania, Fagin Hall 418 Curie Boulevard, Philadelphia, PA 19104-4217.
Email: [email protected]
Search for more papers by this authorFunding information National Institute of Nursing Ruth L. Kirschstein NRSA (T32NR007100) University of Pennsylvania School of Nursing
Abstract
enBackground
The increasing incidence of type 1 diabetes (T1D) in youth aged less than 20 years in the USA is a mounting public health concern. Specific sociodemographic characteristics—racial/ethnic minority, low socioeconomic status (SES), single-parent home and underinsured—have been associated with increased risk for poor glycemic control and poor self-management in adolescents with T1D.
Methods
Sample demographic and cultural responsiveness methods in psychosocial and behavioral interventions focused on improving self-management and glycemic control in adolescents with T1D were systematically evaluated, to identify if studies were targeting these high-risk groups. Keyword searches of PsychInfo, PubMed and CINAHL identified 259 studies published between 2006 and 2016, of adolescents (13-18 years old) with T1D; 28 studies met inclusion criteria.
Results
Samples focused predominantly on White adolescents with fair glycemic control, from middle-high income, two-parent households with private insurance. The majority of studies scored poorly in cultural responsiveness and moderately in culturally responsive reporting. Studies lacked descriptions of culturally inclusive recruitment and sampling methods, and use of culturally responsive assessments for diverse groups. The majority of studies recruited and enrolled homogeneous adolescent samples from the lowest risk groups.
Conclusion
T1D intervention researchers must increase targeted recruitment and sampling methods to include more high-risk pediatric T1D groups, expand sociodemographic reporting, and increase the use of culturally responsive recruitment and sampling methods, such as those used in community-based participatory research. Such efforts have the potential to reduce T1D disparities by making interventions more relevant to the unique needs, goals and priorities of highest risk groups.
摘要
zh背景
美国20岁以下的青少年1型糖尿病(T1D)发病率在不断上升，这是一个日益严重的公共卫生问题。特殊的社会人口统计学特征——种族/少数民族、社会经济地位低、单亲家庭以及保险不足——这些都会导致青少年T1D患者血糖控制不佳以及自我管理不良的风险增加。
方法
为了明确既往那些研究是否就是针对这些高危人群，本研究采用抽样人口统计与文化反应能力评估法，系统性地评估了既往那些聚焦于改善青少年T1D患者自我管理能力以及血糖控制情况的社会心理与行为干预研究。在PsychInfo、PubMed以及CINAHL数据库中按照关键词进行搜索后检出了259项在2006至2016年之间发表的青少年(13-18岁)T1D研究；其中有28项研究达到了入选标准。
结果
样本主要来源于血糖控制良好的白人青少年T1D患者，他们来自于中高等收入、有私人保险的双亲家庭。大多数研究的文化反应能力评分都较低而文化反应能力的报告为中等。研究都没有描述文化反应包含什么以及所采用的抽样方法，并且缺少对不同的群体使用文化反应能力来评估的描述。大多数研究都是从最低风险组中招募与入组对象具有同质性的青少年样本。
结论
T1D干预研究者必须有针对性地增加招募与抽样的方法，从而能够纳入更多的高危儿童T1D人群，扩充社会人口统计学报告，并且增加评估文化反应能力的方法以及抽样方法，例如社区参与研究中所使用的方法。要调整干预措施使其更加符合最高风险人群的独特需求、目标以及优先事项，通过这些努力才有可能减少T1D的差异性。
Supporting Information
| Filename | Description |
|---|---|
| jdb12889-sup-0001-AppendixS1.docxWord 2007 document , 18.8 KB | Appendix S1. Bal & Trainor's (2016) Rubric for culturally responsive experimental intervention research (CRR) - modified version. |
| jdb12889-sup-0002-AppendixS2.docxWord 2007 document , 21.2 KB | Appendix S2. Summary: search term histories. |
| jdb12889-sup-0003-AppendixS3.docxWord 2007 document , 18.8 KB | Appendix S3. Evaluation scores of individual studies using modified CRR Rubric. |
| jdb12889-sup-0004-AppendixS4.docxWord 2007 document , 15 KB | Appendix S4. Tallied score summaries for each CRR rubric Item. |
Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.
REFERENCES
- 1 SEARCH for Diabetes in Youth Study Group, Liese AD, D'Agostino RB Jr, et al. The burden of diabetes mellitus among US youth: prevalence estimates from the SEARCH for diabetes in youth study. Pediatrics. 2006; 118(4): 1510-1518.
- 2 American Diabetes Association. Statistics about diabetes. http://www.diabetes.org/diabetes-basics/statistics/?loc=db-slabnav. Updated March 22, 2018. Accessed October 30, 2018.
- 3Tao B, Pietropaolo M, Atkinson M, Schatz D, Taylor D. Estimating the cost of type 1 diabetes in the U.S.: a propensity score matching method. PLoS One. 2010; 5(7):e11501.
- 4Dabelea D, Mayer-Davis EJ, Saydah S, et al. Prevalence of type 1 and type 2 diabetes among children and adolescents from 2001 to 2009. JAMA. 2014; 311(17): 1778-1786.
- 5Lipman TH, Levitt Katz LE, Ratcliffe SJ, et al. Increasing incidence of type 1 diabetes in youth: twenty years of the Philadelphia pediatric diabetes registry. Diabetes Care. 2013; 36(6): 1597-1603.
- 6Imperatore GL, Imperatore G, Boyle JP, et al. Projections of type 1 and type 2 diabetes burden in the U.S. population aged. Diabetes Care. 2012; 35(12): 2515-2520.
- 7 American Diabetes Association. 7. Approaches to glycemic treatment. Diabetes Care. 2016; 39(suppl 1): S52-S59. https://doi.org/10.2337/dc16-S010.
- 8Datye KA, Moore DJ, Russell WE, Jaser SS. A review of adolescent adherence in type 1 diabetes and the untapped potential of diabetes providers to improve outcomes. Curr Diab Rep. 2015; 15(8): 51.
- 9Moran A, Jacobs DR Jr, Steinberger J, et al. Insulin resistance during puberty: results from clamp studies in 357 children. Diabetes. 1999; 48(10): 2039-2044.
- 10Modi AC, Pai AL, Hommel KA, et al. Pediatric self-management: a framework for research, practice, and policy. Pediatrics. 2012; 129(2): e473-e485.
- 11Schilling LS, Grey M, Knafl KA. The concept of self-management of type 1 diabetes in children and adolescents: an evolutionary concept analysis. J Adv Nurs. 2002; 37(1): 87-99.
- 12Miller KM, Beck RW, Bergenstal RM, et al. Evidence of a strong association between frequency of self-monitoring of blood glucose and hemoglobin A1c levels in T1D exchange clinic registry participants. 2013; 36(7): 2009-2014.
- 13Evans J, Newton R, Ruta D, MacDonald T, Stevenson R, Morris A. Frequency of blood glucose monitoring in relation to glycaemic control: observational study with diabetes database. Br Med J. 1999; 319: 83-86.
- 14Ziegler R, Heidtmann B, Hilgard D, Hofer S, Rosenbauer J, Holl R. Frequency of SMBG correlates with HbA1c and acute complications in children and adolescents with type 1 diabetes. Pediatr Diabetes. 2011; 12(1): 11-17.
- 15 Centers for Disease Control and Prevention (CDC). National diabetes statistics report. https://www.cdc.gov/diabetes/pdfs/data/statistics/national-diabetes-statistics-report.pdf. Updated 2017. Accessed September, 2017.
- 16Katz ML, Mehta S, Nansel T, Quinn H, Lipsky LM, Laffel LM. Associations of nutrient intake with glycemic control in youth with type 1 diabetes: differences by insulin regimen. Diabetes Technol Ther. 2014; 16(8): 512-518.
- 17Borschuk AP, Everhart RS. Health disparities among youth with type 1 diabetes: a systematic review of the current literature. Fam Syst Health. 2015; 33(3): 297-313.
- 18Guo J, Whittemore R, He GP. The relationship between diabetes self-management and metabolic control in youth with type 1 diabetes: an integrative review. J Adv Nurs. 2011; 67(11): 2294-2310.
- 19Harris MA, Greco P, Wysocki T, Elder-Danda C, White NH. Adolescents with diabetes from single-parent, blended, and intact families: health-related and family functioning. Fam Syst Health. 1999; 17: 181-196.
- 20Harris MA, Freeman KA, Beers M. Family therapy for adolescents with poorly controlled diabetes: initial test of clinical significance. J Pediatr Psychol. 2009; 34(10): 1097-1107.
- 21Lado JJ, Lipman TH. Racial and ethnic disparities in the incidence, treatment, and outcomes of youth with type 1 diabetes. Endocrinol Metab Clin North Am. 2016; 45(2): 453-461.
- 22Neylon OM, O'Connell MA, Skinner TC, Cameron FJ. Demographic and personal factors associated with metabolic control and self-care in youth with type 1 diabetes: a systematic review. Diabetes Metab Res Rev. 2013; 29(4): 257-272.
- 23Thompson SJ, Auslander WF, White NH. Comparison of single-mother and two-parent families on metabolic control of children with diabetes. Diabetes Care. 2001; 24(2): 234-238.
- 24Urbach SL, LaFranchi S, Lambert L, Lapidus JA, Daneman D, Becker TM. Predictors of glucose control in children and adolescents with type 1 diabetes mellitus. Pediatr Diabetes. 2005; 6(2): 69-74.
- 25Willi SM, Miller KM, DiMeglio LA, et al. Racial-ethnic disparities in management and outcomes among children with type 1 diabetes. Pediatrics. 2015; 135(3): 424-434.
- 26Zuijdwijk CS, Cuerden M, Mahmud FH. Social determinants of health on glycemic control in pediatric type 1 diabetes. J Pediatr. 2013; 162(4): 730-735.
- 27Saydah S, Imperatore G, Cheng Y, Geiss LS, Albright A. Disparities in diabetes deaths among children and adolescents - United States, 2000-2014. MMWR Morb Mortal Wkly Rep. 2017; 66(19): 502-505.
- 28Delamater AM, Shaw KH, Applegate EB, et al. Risk for metabolic control problems in minority youth with diabetes. Diabetes Care. 1999; 22(5): 700-705.
- 29Jaser SS, Faulkner MS, Whittemore R, et al. Coping, self-management, and adaptation in adolescents with type 1 diabetes. Ann Behav Med. 2012; 43(3): 311-319.
- 30Lawrence JM, Yi-Frazier JP, Black MH, et al. Demographic and clinical correlates of diabetes-related quality of life among youth with type 1 diabetes. J Pediatr. 2012; 161(2): 201-7.e2.
- 31Valenzuela JM, Seid M, Waitzfelder B, et al. Prevalence of and disparities in barriers to care experienced by youth with type 1 diabetes. J Pediatr. 2014; 164(6): 1369-75.e1.
- 32Grey M, Whittemore R, Jeon S, et al. Internet psycho-education programs improve outcomes in youth with type 1 diabetes. Diabetes Care. 2013; 36(9): 2475-2482.
- 33Whittemore R, Jaser SS, Faulkner MS, et al. Type 1 diabetes eHealth psychoeducation: youth recruitment, participation, and satisfaction. J Med Internet Res. 2013; 15(1):e15.
- 34Naranjo D, Schwartz DD, Delamater AM. Diabetes in ethnically diverse youth: disparate burden and intervention approaches. Curr Diabetes Rev. 2015; 11(4): 251-260.
- 35Zeh P, Sandhu HK, Cannaby AM, Sturt JA. The impact of culturally competent diabetes care interventions for improving diabetes-related outcomes in ethnic minority groups: a systematic review. Diabet Med. 2012; 29(10): 1237-1252.
- 36Moher D, Liberati A, Tetzlaff J, Altman DG, PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Int J Surg. 2010; 8(5): 336-341.
- 37Bal A, Trainor AA. Culturally responsive experimental intervention studies: the development of a rubric for paradigm expansion. Rev Educ Res. 2016; 86(2): 319-359.
- 38Bitsko MJ, Bean MK, Bart S, Foster RH, Thacker L, Francis GL. Psychological treatment improves hemoglobin A1c outcomes in adolescents with type 1 diabetes mellitus. J Clin Psychol Med Settings. 2013; 20(3): 333-342.
- 39Carpenter JL, Price JEW, Cohen MJ, Shoe KM, Pendley JS. Multifamily group problem-solving intervention for adherence challenges in pediatric insulin-dependent diabetes. Clin Pract Pediatr Psychol. 2014; 2(2): 101-115.
10.1037/cpp0000059 Google Scholar
- 40Ellis DA, Naar-King S, Chen X, Moltz K, Cunningham PB, Idalski-Carcone A. Multisystemic therapy compared to telephone support for youth with poorly controlled diabetes: findings from a randomized controlled trial. Ann Behav Med. 2012; 44(2): 207-215.
- 41Ellis DA, Templin T, Naar-King S, et al. Multisystemic therapy for adolescents with poorly controlled type I diabetes: stability of treatment effects in a randomized controlled trial. J Consult Clin Psychol. 2007; 75(1): 168-174.
- 42Faulkner MS, Michaliszyn SF, Hepworth JT. A personalized approach to exercise promotion in adolescents with type 1 diabetes. Pediatr Diabetes. 2010; 11(3): 166-174.
- 43Herbert LJ, Mehta P, Monaghan M, Cogen F, Streisand R. Feasibility of the SMART project: a text message program for adolescents with type 1 diabetes. Diabetes Spectr. 2014; 27(4): 265-269. 5 p.
- 44Holmes CS, Chen R, Mackey E, Grey M, Streisand R. Randomized clinical trial of clinic-integrated, low-intensity treatment to prevent deterioration of disease care in adolescents with type 1 diabetes. Diabetes Care. 2014; 37(6): 1535-1543.
- 45Jaser SS, Patel N, Rothman RL, Choi L, Whittemore R. Check it! A randomized pilot of a positive psychology intervention to improve adherence in adolescents with type 1 diabetes. Diabetes Educ. 2014; 40(5): 659-667.
- 46Jones Herbert L, Sweenie R, Patterson Kelly K, Holmes C, Streisand R. Using qualitative methods to evaluate a family behavioral intervention for type 1 diabetes. J Pediatr Health Care. 2014; 28(5): 376-385. 10 p.
- 47Katz 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): 142-150.
- 48Maranda L, Lau M, Stewart SM, Gupta OT. A novel behavioral intervention in adolescents with type 1 diabetes mellitus improves glycemic control: preliminary results from a pilot randomized control trial. Diabetes Educ. 2015; 41(2): 224-230.
- 49Mulvaney SA, Rothman RL, Osborn CY, Lybarger C, Dietrich MS, Wallston KA. Self-management problem solving for adolescents with type 1 diabetes: intervention processes associated with an internet program. Patient Educ Couns. 2011; 85(2): 140-142.
- 50Mulvaney SA, Anders S, Smith AK, Pittel EJ, Johnson KB. A pilot test of a tailored mobile and web-based diabetes messaging system for adolescents. J Telemed Telecare. 2012; 18(2): 115-118.
- 51Nabors LA, Kichler JC, Burbage ML, Swoboda CM, Andreone TL. Children's learning and goal-setting at a diabetes camp. Diabetes Spectr. 2014; 27(4): 257-263. 7 p.
- 52Nansel TR, Iannotti RJ, Liu A. Clinic-integrated behavioral intervention for families of youth with type 1 diabetes: randomized clinical trial. Pediatrics. 2012; 129(4): e866-e873.
- 53Nansel TR, Iannotti RJ, Simons-Morton BG, et al. Diabetes personal trainer outcomes: short-term and 1-year outcomes of a diabetes personal trainer intervention among youth with type 1 diabetes. Diabetes Care. 2007; 30(10): 2471-2477.
- 54Newton KT, Ashley A. Pilot study of a web-based intervention for adolescents with type 1 diabetes. J Telemed Telecare. 2013; 19(8): 443-449.
- 55Perfect MM, Elkins GR. Cognitive-behavioral therapy and hypnotic relaxation to treat sleep problems in an adolescent with diabetes. J Clin Psychol. 2010; 66(11): 1205-1215.
- 56Raiff BR, Dallery J. Internet-based contingency management to improve adherence with blood glucose testing recommendations for teens with type 1 diabetes. J Appl Behav Anal. 2010; 43(3): 487-491.
- 57Salamon KS, Hains AA, Fleischman KM, Davies WH, Kichler J. Improving adherence in social situations for adolescents with type 1 diabetes mellitus (T1DM): a pilot study. Prim Care Diabetes. 2010; 4(1): 47-55.
- 58Stanger C, Ryan SR, Delhey LM, et al. A multicomponent motivational intervention to improve adherence among adolescents with poorly controlled type 1 diabetes: a pilot study. J Pediatr Psychol. 2013; 38(6): 629-637.
- 59Wang YC, Stewart SM, Mackenzie M, Nakonezny PA, Edwards D, White PC. A randomized controlled trial comparing motivational interviewing in education to structured diabetes education in teens with type 1 diabetes. Diabetes Care. 2010; 33(8): 1741-1743.
- 60Whittemore R, Grey M, Lindemann E, Ambrosino J, Jaser S. Development of an internet coping skills training program for teenagers with type 1 diabetes. Comput Inform Nurs. 2010; 28(2): 103-111.
- 61Whittemore R, Jaser SS, Jeon S, et al. An internet coping skills training program for youth with type 1 diabetes: six-month outcomes. Nurs Res. 2012; 61(6): 395-404.
- 62Wysocki T, Harris MA, Buckloh LM, et al. Effects of behavioral family systems therapy for diabetes on adolescents' family relationships, treatment adherence, and metabolic control. J Pediatr Psychol. 2006a; 31(9): 928-938.
- 63Wysocki T, Harris MA, Buckloh LM, et al. Self-care autonomy and outcomes of intensive therapy or usual care in youth with type 1 diabetes. J Pediatr Psychol. 2006b; 31(10): 1036-1045.
- 64Hollingshead AB. Four Factor Index of Social Status. New Haven, CT: Yale University, Department of Sociology; 1975.
10.1016/0148-9062(75)90418-0 Google Scholar
- 65Braveman P. Health disparities and health equity: concepts and measurement. Annu Rev Public Health. 2006; 27(1): 167-194.
- 66Marmot M, Friel S, Bell R, Houweling TA, Taylor S, Commission on Social Determinants of Health. Closing the gap in a generation: health equity through action on the social determinants of health. Lancet. 2008; 372(9650): 1661-1669.
- 67Hodge DR, Jackson KF, Vaughn MG. Culturally sensitive interventions and health and behavioral health youth outcomes: a meta-analytic review. Soc Work Health Care. 2010; 49(5): 401-423.
- 68Fisher TL, Burnet DL, Huang ES, Chin MH, Cagney KA. Cultural leverage: interventions using culture to narrow racial disparities in health care. Med Care Res Rev. 2007; 64(5 suppl): 243S-282S.
- 69Joo JY. Effectiveness of culturally tailored diabetes interventions for Asian immigrants to the United States: a systematic review. Diabetes Educ. 2014; 40(5): 605-615.
- 70Nam S, Janson SL, Stotts NA, Chesla C, Kroon L. Effect of culturally tailored diabetes education in ethnic minorities with type 2 diabetes: a meta-analysis. J Cardiovasc Nurs. 2012; 27(6): 505-518.
- 71Patino-Fernandez AM, Eidson M, Sanchez J, Delamater AM. What do youth with type 1 diabetes know about the HbA1c test? Child Health Care. 2010; 38(2): 157-167.
- 72Naar-King S, Idalski A, Ellis D, et al. Gender differences in adherence and metabolic control in urban youth with poorly controlled type 1 diabetes: the mediating role of mental health symptoms. J Pediatr Psychol. 2006; 31(8): 793-802.
- 73Gallegos-Macias AR, Macias SR, Kaufman E, Skipper B, Kalishman N. Relationship between glycemic control, ethnicity and socioeconomic status in hispanic and white non-hispanic youths with type 1 diabetes mellitus. Pediatr Diabetes. 2003; 4(1): 19-23.
- 74Coard SI, Wallace SA, Stevenson HC, Brotman LM. Towards culturally relevant preventive interventions: the consideration of racial socialization in parent training with African American families. J Child Fam Stud. 2004; 13(3): 277-293.
10.1023/B:JCFS.0000022035.07171.f8 Google Scholar
- 75Lipman TH, Murphy KM, Kumanyika SK, Ratcliffe SJ, Jawad AF, Ginsburg KR. Racial differences in parents' perceptions of factors important for children to live well with diabetes. Diabetes Educ. 2012; 38(1): 58-66.
- 76Edmonds-Myles S, Tamborlane WV, Grey M. Perception of the impact of type 1 diabetes on low-income families. Diabetes Educ. 2010; 36(2): 318-325.
- 77Knight GP, Roosa MW, Umana-Taylor AJ. Studying Ethnic Minority and Economically Disadvantaged Populations Methodological Challenges and Best Practices. Studying ethnic minority and economically disadvantaged populations. Washington, DC: American Psychological Association; 2009.
10.1037/11887-000 Google Scholar
- 78Gallagher-Thompson D, Singer LS, Depp C, Mausbach BT, Cardenas V, Coon DW. Effective recruitment strategies for latino and caucasian dementia family caregivers in intervention research. Am J Geriatr Psychiatry. 2004; 12(5): 484-490.
- 79Yancey AK, Ortega AN, Kumanyika SK. Effective recruitment and retention of minority research participants. Annu Rev Public Health. 2006; 27: 1-28.
- 80Berge JM, Mendenhall TJ, Doherty WJ. Using community-based participatory research (CBPR) to target health disparities in families. Fam Relat. 2009; 58(4): 475-488.
- 81La Roche MJ, Koinis-Mitchell D, Gualdron L. A culturally competent asthma management intervention: a randomized controlled pilot study. Ann Allergy Asthma Immunol. 2006; 96(1): 80-85. https://doi.org/10.1016/S1081-1206(10)61044-7.
- 82Leonard BJ, Jang YP, Savik K, Plumbo PM, Christensen R. Psychosocial factors associated with levels of metabolic control in youth with type 1 diabetes. J Pediatr Nurs. 2002; 17(1): 28-37.
- 83Vangeepuram N, Townsend K, Arniella G, Goytia C, Horowitz CR. Recruitment in clinical vs community-based sites for a pilot youth diabetes prevention program, East Harlem, New York, 2011-2012. Prev Chronic Dis. 2016; 13:E14.
- 84Baxley S. Adolescent participation in research: a model of ethnic/minority recruitment and retention. J Theory Constr Test. 2014; 18(2): 33.
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