The lived experiences of young people (13–16 years) with Type 1 diabetes mellitus and their parents – a qualitative phenomenological study

Within a programme of research aiming to develop a technology‐based educational intervention for young people with Type 1 diabetes, this study aimed to explore adolescents’ and parents’ experiences of living with Type 1 diabetes from an interpretive phenomenological perspective.

[1]  D. Golicki,et al.  Continuous Glucose Monitoring System in children with type 1 diabetes mellitus: a systematic review and meta-analysis , 2008, Diabetologia.

[2]  Ali Al Mamari,et al.  Riding the Diabetes Rollercoaster: A new approach for health professionals, patients and carers , 2008 .

[3]  P. Hougaard,et al.  Persistent differences among centers over 3 years in glycemic control and hypoglycemia in a study of 3,805 children and adolescents with type 1 diabetes from the Hvidøre Study Group. , 2001, Diabetes care.

[4]  V. Helgeson,et al.  Parent and adolescent distribution of responsibility for diabetes self-care: links to health outcomes. , 2007, Journal of pediatric psychology.

[5]  J. Ivey,et al.  Finding the balance: adolescents with type 1 diabetes and their parents. , 2009, Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners.

[6]  S. Rollnick,et al.  Development and evaluation by a cluster randomised trial of a psychosocial intervention in children and teenagers experiencing diabetes: the DEPICTED study. , 2011, Health technology assessment.

[7]  Sarah W. Fraser,et al.  Coping with complexity: educating for capability , 2001, BMJ : British Medical Journal.

[8]  Susan Michie,et al.  Developing and Evaluating Complex Interventions , 2015 .

[9]  Jane K. Dickinson,et al.  The Lived Experience of Adolescent Females With Type 1 Diabetes , 2004, The Diabetes educator.

[10]  S. Kirk,et al.  Methodological and ethical issues in conducting qualitative research with children and young people: a literature review. , 2007, International journal of nursing studies.

[11]  M. Manen.  Researching Lived Experience: Human Science for an Action Sensitive Pedagogy , 1990 .

[12]  L. Thabane,et al.  The effect of continuous subcutaneous glucose monitoring (CGMS) versus intermittent whole blood finger-stick glucose monitoring (SBGM) on hemoglobin A1c (HBA1c) levels in Type I diabetic patients: a systematic review. , 2008, Diabetes research and clinical practice.

[13]  B. Milton,et al.  Qualitative studies of type 1 diabetes in adolescence: a systematic literature review , 2009, Pediatric diabetes.

[14]  D. Drotar,et al.  Pediatric Self-management: A Framework for Research, Practice, and Policy , 2012, Pediatrics.

[15]  H. Cooper,et al.  A multidisciplinary paediatric diabetes health care team: perspectives on adolescent care , 2011 .

[16]  D. Ciliska,et al.  Parenting children with diabetes and Belsky's Determinants of Parenting Model: literature review. , 2006, Journal of advanced nursing.

[17]  S. Heller,et al.  Pilot study of a novel educational programme for 11–16 year olds with type 1 diabetes mellitus: the KICk-OFF course , 2008, Archives of Disease in Childhood.

[18]  S. Channon,et al.  The experiences of children and their parents in paediatric diabetes services should inform the development of communication skills for healthcare staff (the DEPICTED Study) , 2011, Diabetic medicine : a journal of the British Diabetic Association.

[19]  J. Clawson.  A child with chronic illness and the process of family adaptation. , 1996, Journal of pediatric nursing.

[20]  A. Garwick,et al.  Adolescents' perceptions of parental roles and involvement in diabetes management. , 2005, Journal of pediatric nursing.

[21]  Robert Geyer,et al.  Complexity and Interprofessional Education , 2004 .

[22]  I. Hallström,et al.  Families' lived experience one year after a child was diagnosed with type 1 diabetes. , 2007, Journal of advanced nursing.

[23]  N. Chaturvedi,et al.  Relationship Between Risk Factors and Mortality in Type 1 Diabetic Patients in Europe , 2008, Diabetes Care.

[24]  K. Booth,et al.  A trial of empowerment-based education in type 2 diabetes--global rather than glycaemic benefits. , 2008, Diabetes research and clinical practice.

[25]  J. Gregory,et al.  Management of newly diagnosed diabetes: home or hospital? , 2004, Archives of Disease in Childhood.

[26]  V. Coates,et al.  Diabetes education: what do adolescents want? , 2012, Journal of clinical nursing.

[27]  H. Murphy,et al.  Randomized trial of a diabetes self‐management education and family teamwork intervention in adolescents with Type 1 diabetes , 2012, Diabetic medicine : a journal of the British Diabetic Association.

[28]  S. Oliver,et al.  Maximising engagement, motivation and long term change in a Structured Intensive Education Programme in Diabetes for children, young people and their families: Child and Adolescent Structured Competencies Approach to Diabetes Education (CASCADE) , 2009, BMC pediatrics.

[29]  B. Milton,et al.  Technology‐based approaches to patient education for young people living with diabetes: a systematic literature review , 2009, Pediatric diabetes.

[30]  D. Neumark-Sztainer,et al.  Parenting adolescent girls with type 1 diabetes: parents' perspectives. , 2004, Journal of pediatric psychology.

[31]  D. Kolb.  Experiential Learning: Experience as the Source of Learning and Development , 1983 .

[32]  Helen Cooper,et al.  Development of an Adolescent Diabetes Needs Assessment Tool (ADNAT Study) , 2010 .

[33]  T. Skinner,et al.  Improving glycaemic control in children and adolescents: which aspects of therapy really matter? , 2010, Diabetic medicine : a journal of the British Diabetic Association.