Qualitative studies of type 1 diabetes in adolescence: a systematic literature review

Spencer, Joy; Cooper, Helen; Milton, Beth

doi:10.1111/j.1399-5448.2009.00603.x

Cited by 48 publications

(50 citation statements)

References 48 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…The transition from childhood to adolescence and the child's appertaining independence-seeking behaviour, possibly complicated by physiological changes in multiple hormones accompanying puberty, might cause symptom neglect and progression into DKA. Individual and inter-personal factors, including personality types, mental health issues, peer relationships and family dynamics, may also have an important influence on both initial presentation and future glycaemic regulation, possibly with similarities to the challenges reported by adolescents and to their experiences of living with type 1 diabetes [33].…”

Section: Discussionmentioning

confidence: 99%

Diabetic ketoacidosis at the onset of type 1 diabetes is associated with future HbA1c levels

et al. 2013

View full text Add to dashboard Cite

Aims/hypothesis We investigated the long-term impact of diabetic ketoacidosis (DKA) at onset on metabolic regulation and residual beta cell function in a Danish population with type 1 diabetes. Methods The study is based on data from DanDiabKids, a Danish national diabetes register for children. The register provides clinical and biochemical data on patients with type 1 diabetes diagnosed in 1996-2009 and then followed-up until 1 January 2012. Repeated-measurement models were used as statistical methods.Results The study population comprised 2,964 children <18 years. The prevalence of DKA at diagnosis was 17.9%. Of the total subjects, 8.3% had mild, 7.9% had moderate and 1.7% had severe DKA. DKA (moderate and severe) was associated with increased HbA 1c (%) levels (0.24; 95% CI 0.11, 0.36; p=0.0003) and increased insulin dose-adjusted HbA 1c (IDAA 1c , 0.51; 95% CI 0.31, 0.70; p<0.0001) during followup, after adjustment for covariates. Children without a family history of diabetes were more likely to present with DKA (19.2% vs 8.8%, p<0.0001); however, these children had a lower HbA 1c (%) level over time (−0.35; 95% CI −0.46, −0.24; p<0.0001). Continuous subcutaneous insulin infusion (CSII) was associated with a long-term reduction in HbA 1c , changing the effect of DKA, after adjustment for covariates (p<0.0001). Conclusions/interpretation DKA at diagnosis was associated with poor long-term metabolic regulation and residual beta cell function as assessed by HbA 1c and IDAA 1c, respectively; however, CSII treatment was associated with improvement in glycaemic regulation and residual beta cell function, changing the effect of DKA at onset in our population.

show abstract

Section: Discussionmentioning

confidence: 99%

Diabetic ketoacidosis at the onset of type 1 diabetes is associated with future HbA1c levels

et al. 2013

View full text Add to dashboard Cite

show abstract

“…Indeed, more than a decade ago it was noted that one of the barriers to a chronic disease model was 'understanding of the personnel and social-environmental factors that lead to long-term sustained self-directed behaviour change' (Glasgow et al 2001, p. 126). Yet to date research still states that social relationships are a key factor in type 1 diabetes management (Spencer, Cooper & Milton, 2010) and, while a number of studies have focussed on adolescents' experiences of managing their diabetes (Christian, D'Auria & Fox, 1999;Huus & Enskär, 2007;Kyngäs & Hentinen, 1995), there is still a need to further explore self-management as an adaptive and transitional process that can be contextualised within a personcentred, psychosocial context. Therefore, it is the aim of this investigation to understand how adolescents adapt to their self-management requirements from diagnosis to the point of successful selfmanagement.…”

Section: Introductionmentioning

confidence: 98%

Understanding adolescent type 1 diabetes self-management as an adaptive process: A grounded theory approach

Chilton

Pires-Yfantouda

2015

Psychology & Health

View full text Add to dashboard Cite

This investigation provides a conceptual understanding of the complex issues adolescents encounter while adapting to and integrating a diabetes self-management regime into their lives. It provides an invaluable framework for exploring psychological mechanisms and contextualising them within a self-management continuum. Implications for healthcare professionals are discussed and further research proposes whether the model could be applicable to other chronic illnesses.

show abstract

“…Spencer et al 213 scored high with 31 out of 40, but Palladino and Helgeson 212 scored low with 20 out of 40 and was therefore given lower weighting in informing the findings of this meta-review 212 (see Table 110 for detailed description of quality scoring). Specifically, Palladino and Helgeson 212 did not explicitly state which studies were qualitative and quantitative so assumptions had be made by the meta-reviewer based on statements in the text.…”

Section: Quality Assessmentmentioning

confidence: 99%

“…Some of the primary qualitative studies were included in both reviews, with an overall total of 22 unique studies (published from 1994 to 2009). Both Spencer et al 213 and Palladino and Helgeson's 212 reviews examined experiences of T1DM in adolescents, with Palladino and Helgeson's review 212 specifically focusing on the influence of peers (Table 109).…”

Section: Systematic Reviews Identifiedmentioning

confidence: 99%

See 1 more Smart Citation

A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic RevIew of Self-Management Support for long-term conditions

Taylor

Pinnock

Epiphaniou

et al. 2014

Health Services and Delivery Research

336

451

View full text Add to dashboard Cite

BackgroundDespite robust evidence concerning self-management for some long-term conditions (LTCs), others lack research explicitly on self-management and, consequently, some patient groups may be overlooked.AimTo undertake a rapid, systematic overview of the evidence on self-management support for LTCs to inform health-care commissioners and providers about what works, for whom, and in what contexts.MethodsSelf-management is ‘the tasks . . . individuals must undertake to live with one or more chronic conditions . . . [including] . . . having the confidence to deal with medical management, role management and emotional management of their conditions’. We convened an expert workshop and identified characteristics of LTCs potentially of relevance to self-management and 14 diverse exemplar LTCs (stroke, asthma, type 2 diabetes mellitus, depression, chronic obstructive pulmonary disease, chronic kidney disease, dementia, epilepsy, hypertension, inflammatory arthropathies, irritable bowel syndrome, low back pain, progressive neurological disorders and type 1 diabetes mellitus). For each LTC we conducted systematic overviews of systematic reviews of randomised controlled trials (RCTs) of self-management support interventions (‘quantitative meta-reviews’); and systematic overviews of systematic reviews of qualitative studies of patients’ experiences relating to self-management (‘qualitative meta-reviews’). We also conducted an original systematic review of implementation studies of self-management support in the LTCs. We synthesised all our data considering the different characteristics of LTCs. In parallel, we developed a taxonomy of the potential components of self-management support.ResultsWe included 30 qualitative systematic reviews (including 515 unique studies), 102 quantitative systematic reviews (including 969 RCTs), and 61 studies in the implementation systematic review. Effective self-management support interventions are multifaceted, should be tailored to the individual, their culture and beliefs, a specific LTC and position on the disease trajectory, and underpinned by a collaborative/communicative relationship between the patient and health-care professional (HCP) within the context of a health-care organisation that actively promotes self-management. Self-management support is a complex intervention and although many components were described and trialled in the studies no single component stood out as more important than any other. Core components include (1) provision of education about the LTC, recognising the importance of understanding patients’ pre-existing knowledge and beliefs about their LTC; (2) psychological strategies to support adjustment to life with a LTC; (3) strategies specifically to support adherence to treatments; (4) practical support tailored to the specific LTC, including support around activities of daily living for disabling conditions, action plans in conditions subject to marked exacerbations, intensive disease-specific training to enable self-management of specific clinical tasks; and (5) social support as appropriate. Implementation requires a whole-systems approach which intervenes at the level of the patient, the HCP and the organisation. The health-care organisation is responsible for providing the means (both training and time/material resources) to enable HCPs to implement, and patients to benefit from, self-management support, regularly evaluating self-management processes and clinical outcomes. More widely there is a societal need to address public understanding of LTCs. The lack of public story for many conditions impacted on patient help-seeking behaviour and public perceptions of need.ConclusionsSupporting self-management is inseparable from the high-quality care for LTCs. Commissioners and health-care providers should promote a culture of actively supporting self-management as a normal, expected, monitored and rewarded aspect of care. Further research is needed to understand how health service managers and staff can achieve this culture change in their health-care organisations.Study registrationThis study is registered as PROSPERO CRD42012002898.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

show abstract

Qualitative studies of type 1 diabetes in adolescence: a systematic literature review

Abstract: Spencer J, Cooper H, Milton B. Qualitative studies of type 1 diabetes in adolescence: a systematic literature review.

Cited by 48 publications

References 48 publications

Diabetic ketoacidosis at the onset of type 1 diabetes is associated with future HbA1c levels

Diabetic ketoacidosis at the onset of type 1 diabetes is associated with future HbA1c levels

Understanding adolescent type 1 diabetes self-management as an adaptive process: A grounded theory approach

A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic RevIew of Self-Management Support for long-term conditions

Contact Info

Product

Resources

About