Healthcare system and professionals
Objectives
- To provide optimum education and psychosocial support for children, young people and their families
- To advocate for regular psychosocial assessment
- To ensure a smooth transition to adult care
Inspirational questions
Do you
- Provide ongoing age-appropriate education and support?
- Assess the psychosocial functioning of your patients on a regular basis?
- Assist in making the transition to adult care as smooth as possible?
Topics in focus
- Age-appropriate education and support
- Therapeutic communication and team collaboration
- Psychosocial assessment and support
- Transition to adult care
Expert content reviewer
Prof. Dr. Karin Lange Medizinische Psychologie
Medizinische Hochschule Hannover
Germany
- Pediatric diabetes teams, psychologists and psychiatrists
Content
- Background information – international recommendations and guidelines; DAWN Youth publications, scientific posters/abstracts, articles, powerpoint presentations and video material
- Practical tools and programs – including structured descriptions of national DAWN Youth initiatives
- Ongoing research projects
Age-appropriate education and support
Children with diabetes mellitus and family functioning: Translating research into practice | Anderson BJ. Children with diabetes mellitus and family functioning: Translating research into practice. Journal of Pediatric Endocrinology & Metabolism 2001;14 (suppl. 1):645-652. Curriculum or program outline included | |
The urgent need for age-appropriate, ongoing psychosocial support | Anderson BJ. Presentation at the DAWN Youth Summit in Berlin 2007: ‘The urgent need for age-appropriate, ongoing psychosocial support’ | ENG |
Diabetes complications in youth: qualitative analysis of parents' perspectives of family learning and knowledge | Buckloh LM, Lochrie AS, Antal H, Milkes A, Canas JA, Hutchinson S, Wysocki T. Diabetes complications in youth: qualitative analysis of parents' perspectives of family learning and knowledge. Diabetes Care 2008;31(8):1516-1520. | |
Educational and psychosocial programmes for adolescents with diabetes: approaches, outcomes and cost-effectiveness | Gage H, Hampson S, Skinner C, Hart J, Storey L, Foxcroft D, Kimber A, Cradoc S, McEvilly AE. Educational and psychosocial programmes for adolescents with diabetes: approaches, outcomes and cost-effectiveness. Patient Education and Counseling 2004;53:333-346. | |
The development of an innovative education curriculum for 11-16 yr old children with type 1 diabetes mellitus | Knowles J, Waller H, Eiser C, Heller S, Roberts J, Lewis M, Wilson K, Hutchinson T, Willan M, Bavelja P, Bennet G, Price K. The development of an innovative education curriculum for 11-16 yr old children with type 1 diabetes mellitus. Pediatric Diabetes 2006;7:322-328. Curriculum or program outline | |
Prerequisites for age-appropriate education in type 1 diabetes: a model programme for paediatric diabetes education in Germany | Lange K, Sassmann H, von Schütz W, Kordonouri O, Danne T. Prerequisites for age-appropriate education in type 1 diabetes: a model programme for paediatric diabetes education in Germany. Pediatric Diabetes 2007:8(suppl. 6):63-71. Curriculum or program outline included | |
Adolescents’ perceptions of parental roles and involvement in diabetes management | Leonard BJ, Garwick A, Adwan JZ. Adolescents’ perceptions of parental roles and involvement in diabetes management. Journal of Pediatric Nursing 2005;20(6):405-414. | |
The role of autonomy and pubertal status in understanding age differences in maternal involvement in diabetes responsibility across adolescence | Palmer DL, Berg CA, Wiebe DJ, Beveridge RM, Korbel CD, Upchurch R, Swinyard MT, Lindsay 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(1):35-46. | |
Changing patterns of selv-management in youth with type 1 diabetes | Schilling LS, Knafl KA, Grey M. Changing patterns of selv-management in youth with type 1 diabetes. Journal of Pediatric Nursing 2006;21(6):412-424. | |
Adolescent views of diabetes-related parent conflict and support: a focus group analysis | Weinger K, O'Donnell KA, Ritholz MD. Adolescent views of diabetes-related parent conflict and support: a focus group analysis. Journal of Adolescent Health 2001;29(5): 330-336. |
Therapeutic communication and team collaboration
A need for educational and managerial skills for long-term follow-up | Assal JP. Revisiting the approach to treatment of long-term illness: from the acute to the chronic state. A need for educational and managerial skills for long-term follow-up. Patient Educ Couns 1999;37:99-111. | |
Therapeutic education of patients. New approaches to chronic illness | Lacroix A, Assal JP. Therapeutic education of patients. New approaches to chronic illness. Paris: Maloine, 2003. |
Psycho-social assessment and support
Psychosocial assessment tools: a review on generic and diabetes specific instruments | Aanstoot HJ, de Wit M. Presentation at the DAWN Youth Summit in Berlin 2007: Psychosocial assessment tools: a review on generic and diabetes specific instruments | ENG |
Facilitating Family Teamwork | Anderson BJ. Presentation at the DAWN Youth advisory board meeting in Budapest 2008: ‘Facilitating Family Teamwork’ | ENG |
An office-based intervention to maintain parent-adolescent teamwork in diabetes management | Anderson BJ, Brackett J, Ho J, Laffel LMB. An office-based intervention to maintain parent-adolescent teamwork in diabetes management. Impact on parent involvement, family conflict and subsequent glycemic control. Diabetes Care 1999; 22:713-721. | |
Monitoring and discussing health-related quality of life in adolescents with type 1 diabetes improve psychosocial well-being: a randomized controlled trial | de Wit M, Delemarre-van de Waal HA, Bokma JA, Haasnoot K, Houdijk MC, Gemke RJ, Snoek FJ. Monitoring and discussing health-related quality of life in adolescents with type 1 diabetes improve psychosocial well-being: a randomized controlled trial. Diabetes Care 2008;31(8):1521-1526 | |
Self-report and parent-report of physical and psychosocial well-being in Dutch adolescents with type 1 diabetes in relation to glycemic control | de Wit M, Delemarre-van de Waal HA, Bokma JA, Haasnoot K, Houdijk MC, Gemke RJ, Snoek FJ. Self-report and parent-report of physical and psychosocial well-being in Dutch adolescents with type 1 diabetes in relation to glycemic control. Health and Quality of Life Outcomes 2007;5:10 | |
Validation of the WHO-5 Well-Being Index in adolescents with type 1 diabetes | de Witt M, Pouwer F, Gemke RJBJ, Delemarre-van de Waal HA , Snoek FJ. Validation of the WHO-5 Well-Being Index in adolescents with type 1 diabetes. Diabetes Care 2007;30(8):2003-2006. | |
Presentation at the ISPAD Symposium 2008: ‘Towards a new paradigm for paediatric diabetes care’ | Hoey H. Presentation at the ISPAD Symposium 2008: ‘Towards a new paradigm for paediatric diabetes care’ | ENG |
Good metabolic control is associated with better quality of life in 2.101 adolescents with type 1 diabetes | Hoey H, Aanstoot HJ on behalf of the Hvidøre Study Group on Childhood Diabetes. Good metabolic control is associated with better quality of life in 2.101 adolescents with type 1 diabetes. Diabetes Care 2001; 24:1923-8. | |
Support network of adolescents with chronic disease: adolescents' perspective | Kyngäs H. Support network of adolescents with chronic disease: adolescents' perspective. Nursing & Health Sciences 2004;6(4):287-293. | |
Quality of life, metabolic control and satisfaction with long-term care during the phase of transition | Lange K, Sassmann H, Ziegler C, Landgraf R, Danne T. ‘Adolescents and young adults with diabetes type 1 at Camp D (2006) and my Camp D (2008). Quality of life, metabolic control and satisfaction with long-term care during the phase of transition’ | ENG |
Driving research and action for long-term improvements in Denmar | Olsen B. Driving research and action for long-term improvements in Denmark. Diabetes Voice 2008;53(Special issue):27-28 | ENG |
Emotional and quality-of-life aspects of diabetes management | Polonsky WH. Emotional and quality-of-life aspects of diabetes management. Current Diabetes Reports 2002;2:153-159. | |
A short form of the quality of life for youth questionnaire | Skinner TC, Hoey H, McGee HM, Skovlund SE. A short form of the quality of life for youth questionnaire: exploratory and confirmatory analysis in a sample of 2,077 young people with type 1 diabetes mellitus. Diabetologia 2006;49:621-628. | |
Improving quality of life and solving problems at schools in the Netherlands | Stouthart P. Improving quality of life and solving problems at schools in the Netherlands. Diabetes Voice 2008;53(Special issue):31-32 | ENG |
Age, metabolic control and type of insulin regime influences health-related quality of life in children and adolescents with type 1 diabetes | Wagner VM, Müller-Godeffroy E, von Sengbusch S, Häger S, Thyen U. Age, metabolic control and type of insulin regime influences health-related quality of life in children and adolescents with type 1 diabetes. European Journal of Pediatrics 2005;164:491-496. | |
Children’s appraisals of maternal involvement in coping with diabetes: enhancing our understanding of adherence, metabolic control and quality of life across adolescence | Wiebe DJ, Berg CA, Korbel C, Palmer DL, Beveridge RM, Upchurch R, Lindsay R, Swinyard MT, Donaldson DL. Children’s appraisals of maternal involvement in coping with diabetes. Journal of Pediatric Psychology 2005;30(2):167-178. | |
Behavioural assessment and intervention in pediatric diabetes | Wysocki T. Behavioural assessment and intervention in pediatric diabetes. Behavior Modification 2006;30(1):72-92. | |
Social support and diabetes management in childhood and adolescence: Influence of Parents and friends | Wysocki T, Greco P. Social support and diabetes management in childhood and adolescence: Influence of Parents and friends. Current Diabetes Reports 2006;6:117-122. |
Transition to adult care
A developmental perspective on the challenges of diabetes education and care during the young adult period | Anderson BJ, Wolpert HA. A developmental perspective on the challenges of diabetes education and care during the young adult period. Patient Education and Counseling 2004;53:347-352. Guidelines included | |
Evaluation of patients’ opinion and metabolic control after transfer of young adults with type 1 diabetes from a pediatric clinic to adult care | Busse FP, Hiermann P, Galler A, Stumvoll M, Wiessner T, Kiess W, Kapellen TM. Evaluation of patients’ opinion and metabolic control after transfer of young adults with type 1 diabetes from a pediatric clinic to adult care. Hormone Research 2007;67:132-138. | |
A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 year | Holmes-Walker DJ, Llewellyn AC, Farrell K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 years. Diabetic Medicine 2007;24:764-769. Curriculum or program outline included | |
Current methods of transfer of young people with type 1 diabetes to adult services | Kipps S, Bahu T, Ong K, Acklandt FM, Brown RS, Fox CT, Griffin NK, Knight AH, Mann NP, Neil HAW, Simpson H, Edge JA, Dunger DB. Current methods of transfer of young people with type 1 diabetes to adult services. Diabetic Medicine 2002;19:649-654. | |
Transition of diabetes care from pediatrics to adulthood | Kollipara S, Kaufman FR. Transition of diabetes care from pediatrics to adulthood. School Nurse News 2008;Jan:27-29. Guidelines and recommendations included | |
How do we organize smooth, effective transfer from pediatric to adult diabetes care? | McGill M. How do we organize smooth, effective transfer from pediatric to adult diabetes care? Hormone Research 2002;57(suppl 1):66-68. Guidelines included | |
Building connections for young adults with type 1 diabetes mellitus in Mannitoba: Feasibility and acceptability of a transition initiative | Van Walleghem N, MacDonald CA, Dean HJ. Building connections for young adults with type 1 diabetes mellitus in Mannitoba: Feasibility and acceptability of a transition initiative. Chronic Diseases in Canada 2006;27(3):130-134. Program outline included |
IDF and ISPAD recommendations /guidelines
The global burden of youth diabetes: perspectives and potential; and an ISPAD charter paper | International Society for Pediatric and Adolescent Diabetes (ISPAD). Diabetes in children: psychosocial aspects. In: The global burden of youth diabetes: perspectives and potential; a charter paper. Pediatric Diabetes 2007;8(8):26-31. | |
ISPAD Clinical Practice Consensus Guidelines 2006-2007. Psychological care of children and adolescents with diabetes | Delamater A M. ISPAD Clinical Practice Consensus Guidelines 2006-2007. Psychological care of children and adolescents with diabetes. Pediatric Diabetes 2007;8:340-348 | ENG |
DAWN Youth publications and video materiel
Booklet ‘Changing diabetes through DAWN Youth’ | ENG | |
Video ‘Information’ (Matthew, England) | ENG | |
Young people’s needs and priorities for improved support and education: a call for action | Nielsen AØ, Lewis D, McEnery C, Pedersen J, Salkow M, Skovlund S, Greene A. Young people’s needs and priorities for improved support and education: a call for action. Diabetes Voice 2007;52(special issue, November):41-42 | ENG |
